Life after Loss

It has now been almost 3 months since Matthew was born.

My journey through healing after his birth felt like a long one (I don't have anything to compare it to!), almost 2 weeks spent in bed with a week or two more before I felt like I could cook and care for the house by myself decently. My energy level took a long time to come up enough to do all of our normal activities.

In addition to our recovery from the birth we had to deal with grief and incredibly empty arms. I still greatly long to hold a newborn in my arms (anyone's newborn), so that I can feel that again but it looks like I will have to wait for my nephew to be born in April. That first week was so hard! I struggled with missing feeling Matthew moving inside of me, realizing that I was alone in my body again. Wanting to hold him and see him near me, but knowing that it could never happen was awful. As the weeks went by those feelings began to ease.

God has continued to be faithful to us, providing friends and family that cared for us and having people who had gone through similar things to talk to.

We were able to go see Matthew one last time the Friday after he was born so that we could place him in his casket. It was almost as hard as giving him up the first time. To see him, our first child who we love so much, for the last time.

A week and a half after his birth we buried him in a cemetery near us. This cemetery has a section called "Baby Land" where people can bury their infants and children. Matthew's grave is just one diagonal from the grave of my sister, Johanna, who my parents lost at 19 weeks when I was 1 1/2 years old. It was hard to watch my husband and dad place Matthew's casket in the grave. After the short ceremony we had a reception at Jon's parent house. It was a sweet time of seeing family together.

A Christmas ornament with some of Matthew's items

As these months have passed I am truly grateful that what I believe to be the worst of the grief has passed. Thinking about him and all that happened is still hard and I still cry about it, but it isn't nearly as often. Knowing that all of Matthew's life had a purpose and that God chose for his life to be that long/short helps me to be able to give him up. I do not feel bitter or angry at God and, though I miss him, I have peace knowing that he fulfilled the purpose God had for him.

Jon and I both wanted to have another little one as soon as God would allow. We prayed and hoped that it wouldn't be too long. God has answered our prayer and we are expecting again! I am due on August 14th, 2016. God blessed us with another little one only 6 weeks after losing Matthew.

I am only 7 1/2 weeks along, and though I am not afraid of the same diagnosis (it isn't very likely), I still have fears of something or anything happening to this baby. Please be praying that this pregnancy will go smoothly and that God would protect "ducky" as we call him or her (a character in the Land Before Time movies :) ) from danger. Please also pray that I would not be afraid or fall into worry.

We are praising God for this gift and can't wait to share him/her with the world! We will never forget Matthew but we are grateful that we will have other little ones to love on as we wanted to do with him.

5 weeks along, I still have left over pudge from Matthew :)

Matthew's Birth - Part 4

If you haven't read the first parts click here to start at the beginning.

Jon and I began crying with joy and sadness. He was so sweet and small. We began looking him over and getting to know him visually. He had such ruby red lips and his eyes were open. He had lots of long dark hair (at least ½ an inch long!). The skin on the back of his right hand was broken from being born next to his head and it was indeed clenched. I looked for his feet and they were up by his chest, he was sitting like he had been while breech. His left foot was turned (clubbed) and small. He had his daddy's nose. His ears were small and low set. His mouth was open some of the time and we were able to see his little tongue and it looks like his palate was high but whole. His skin/body were blue. His second and third toes were longer than his big toes! I later realized that his right foot looked like my feet, long and narrow.

His skin was so fragile we decided to swaddle him before I handed him off to Jon. We took one the blankets we brought and I wrapped him up to hand him to his daddy. What a moment that was. He loves our little boy so much! Many tears were shed in those moments. Because of his skin we chose an outfit that could completely open up so that we wouldn't have to put his arms through the sleeves. We got him weighed (he was 3 lbs 15 oz) then he got handed back to me so I could snap up his outfit. We had a super soft and fluffy white blanket that we placed him in.

As all of this was happening they repaired the tears that I had gotten (his arm had been a problem) and cleaned me up. I was so unaware of what they were doing at first they were able to do a urine catheter without me noticing and they were amazed at how much I had in there! I know, TMI :) I had a normal amount of blood loss and everything seemed fine.

Soon the repair was done and all of the hospital staff left the room. We asked for a moment alone to cry. After a while I realized that my mom hadn't held him yet so we called her back in. Jon's parents had been called to let them know they could come previously since they had to drive from their hotel. They arrived a little later.

After family had gotten to hold him we had the nurse take Matthew over to a bed so that she could do his foot prints in ink and so that we could sleep. We slept for about an hour. I have never been so tired. It was hard to open my eyes when waking up. At some point we asked my mom to call the funeral home to come pick him up later. They told us they would be there between 11:00am and 12:00pm (that gave us several hours more with him). My dad had to drive all the way from home so he came around 9:00am and was able to see and hold him. At this point everyone headed home and we were left alone.

After a while I told Jon I was ready to hold him again so he brought him to me. It was then that our grief hit. So much pain and loss, so intense. It is inexplicable. I couldn't even give my husband a hug when he was grieving because I was stuck in the bed, but he came to me and cuddled with me and our son. It was a perfect moment, me curled on my side with Matthew in my arms and Jon curled behind me. How sweet to be a whole family for a moment. We knew we didn't have much time left with him. By now I truly loved him and didn't want to give him up. It felt so good to have him in my arms, I didn't want to say goodbye.

We called in a nurse and told her that we were ready for his memory box to be made with a bit of his hair and a foot print in clay. She graciously and beautifully made it for us. She wrapped him up better with a flannel blanket outside of the white blanket so that when we handed him off we could keep the flannel blanket for his memory. He will be buried in that outfit and blanket.

When the guy from the funeral home came he was super understanding and nice and told us a little about losing his little girl before birth. After we made some decisions the nurse asked if we wanted one last moment alone with him. We told her that we did. How hard it is to say goodbye! To know that you may never see that sweet face again this side of heaven. To give away that sweet boy only a few hours after his birth. I have never done anything so hard as letting him go. When we were ready the nurse gave us the flannel blanket and sweetly and carefully carried him out of the room. That blanket became him for me. We wept more.

After a time I felt tired again but Jon wasn't so he went to the waiting room while I attempted a nap. We had decided to leave around 4:00. I only got about a 30 minute nap but we did leave around that time after attempting to leave earlier to avoid traffic. We had a safe and uneventful ride home and arrived to a house that had been made spotless by my mom, sister-in-law and a friend. The hardest day of our lives was over and we headed to bed to sleep for a long time.

Matthew's Birth - Part 3

If you haven't read the previous parts click here for part 1.

Attempting to finish the blanket
between contractions (earlier in the day)

We knew that we needed to keep labor going but I was too weak to actively work at it and was mentally and emotionally drained so much that I could only cry at the thought of starting pitocin (which would make the contractions strong and close together). At this point they began suggesting an epidural. I did not want an epidural, not because I think it is wrong, but I so wanted to go without drugs and I was afraid of the potential side effects and the possibility of not being fully mentally there at the birth (because of the drugs). As they talked with me, my mom, Carolynn, the and the nurse encouraged me to consider it because we needed to start the pitocin but they told me that I was the one who had to choose. Jon told me that it had to be my decision and that he would support me no matter what I chose. I decided to have the doctor check me and that if I was close we would try without but that if I wasn't we would do the epidural. I was so drained I couldn't even cope with the pain of being checked and that sealed my decision to get the epidural since I was only 5cm or so. I wanted the epidural started before the pitocin.

Jon was right there with me through the epidural placement

The doctor ordered the epidural and they were ready surprisingly quickly. The anesthesia team were very kind and understanding. They were very gentle and told me to let them know if I felt any pain. I did end up getting extra local anesthetic because I could feel their pokes. Even with the epidural the contractions were still painful but easily handled and I could actually feel most of my legs (especially the left one). I was really happy about that because I really didn't want total lack of feeling and hoped that when it came time to push I would be able to feel it. Once the epidural was in place they started pitocin and we all prepared for bed so that we could get some rest before the end. It was about 10:30pm when we began sleeping.

The layette I knitted for him
(The blanket matches the pattern)

I woke up around 1:00 or so and the nurse explained that they would need to do a urine catheter soon. I asked for the chance to try to go without it so she ordered a portable “commode”. I was also beginning to feel the contractions quite painfully in my left hip so I tried switching sides and getting extra epidural medicine. She said to try pushing the button as many times as I needed it and that after three times if it wasn't enough we could call in the anesthesiologists to give me more. After three times it wasn't enough so we did alert them. Somewhere during those three button pushes I felt like I was having some pressure during contractions (possible baby pressure) so we called in the doctors to check me. At 2:00am they checked me and said I was still 5cm, not quite 6cm. How depressing! I didn't worry about it too much though because my mom has a history of going quite suddenly from 6cm to 10cm! We decided to place a peanut ball between my legs to encourage things along and to up the pitocin dose some more and everyone went back to sleep. Around 2:45 I suddenly began to feel intense pressure, my contractions became super close and I began essentially hyperventilating so my mom called in the nurse right away and I told her I felt like he was coming! She called in the doctor and the doctor found that I was fully dilated!

Mom knitting a hat for him earlier

They sweetly told me (which I really appreciate) that I could let the uterus do some of the work of pushing him for now or I could go ahead and push with the contractions. I wanted to push. At this point the urge to push wasn't crazy but his pressure was enough to make me want to push. I felt so much more control while pushing. I had no idea what to do though! I had read books but couldn't really remember what to do. Wonderfully, someone gave me a tip each contraction until I felt like I was doing it right. Some of them were “hold your breath while pushing”, “pull your legs back”, “tuck your chin and pull in your belly button”, etc. I am amazed at how clearly I heard each person that talked even though I was so focused! Jon was right by my left hand and was a wonderful cheerleader!

The first moment I held him

As the pushing urge increased and Matthew moved down the canal it became evident that his hand was up by his head. His hand was actually born first and in between two contractions I was able to reach down and feel it. I began feeling constant pressure and it became quite painful due to his hand down there (I felt very specific and intense burning where his hand was). They encouraged me to rest between pushes (that was super hard) and Jon had to remind me and demonstrate for me to breath deeply because it hurt so bad I was breathing super fast. It was only because of his help that I was able to even attempt to breath deeply through the pain. The second to last contraction before he was born I was almost able to get him out, I could feel it! But not quite. The next contraction I was able to push enough to get his head out and his body slid right out too. The relief in that moment was inexplicable. A moment later they told me “he's right there” and that brought me to the reality that I had just birthed a baby! I looked down and there was his head on my belly! They quickly began unwinding his cord (it was wrapped around his neck a total of 3 times) and I brought him to my chest. I didn't know what to do, he was lying so still.

(to be continued.....)

Matthew's Birth - Part 2

If you haven't read the first part, click here

One last belly shot

By 2 hours after the first dose I was contracting (painlessly, but I could feel it) every 2-3 minutes so they said that they couldn't give me another dose yet and we would wait to see what happened before going to the next step. It continued that way for the next 2 hours (during this time the contractions became a little painful). At the end of the 2 hours the doctors came in and said it was time to make a decision on what to do next. They gave me the option of something called a cook catheter which would essentially be two balloons that were inflated on either side of my cervix to put pressure on it similar to the baby's head or something else that I can no longer recall the name of that would be something like a tampon with a medication on it to introduce an artificial hormone similar to what my body would normally produce to start labor. I decided to go with the cook catheter.

Since it was 3:30am and Jon was sleeping well, I decided to let him keep sleeping while they placed the catheter (he is a hard sleeper and had no idea what was going on). I was informed that they normally give pain killers for this procedure but since I wanted a non medicated labor and delivery they asked if I wanted to have it now, wait and see, or not take it at all. I opted for the wait and see method. It was very uncomfortable (it felt like menstrual cramps a lot of the time) but not too bad so I ended up not receiving the pain meds. They said that I handled it better than a lot of people who have the pain meds and were amazed that I was able to go to the full inflation of 80mls internally and externally (inside the uterus and in the vagina) right away instead of starting with less and increasing as we went. The doctor told me that they would now essentially leave us alone until the 12 hour limit for having it in unless the catheter fell out (which would mean I was dilated).

After they left I got up to get a few things and go to the bathroom and the cramping got a whole lot worse. I woke Jon up to help me deal with it and he couldn't believe that I had let him sleep through that! We tried laying down but pretty quickly I was on the verge of tears and feeling like I couldn't handle the contractions. I remembered reading that when that happens we needed to change what we were doing and find something to help me deal with it. I texted my mom and the doula, Carolynn, (the photographer, Renee, was with her so she came too) and let them know that I was ready for them to come. We got up and began using a birthing ball we had found/asked for and tried rocking and swaying a couple of different ways. We were able to find something that worked for me and my mom arrived shortly. The doula and photographer were delayed a while. After a while we decided to walk the halls (it must have been around 5:00am or so) and as we did that my water broke! It wasn't a gush, just a trickle but, EEWWWW! It had some blood in it so we were pretty sure it wasn't the catheter leaking. As we walked back to the room to clean up I had some more leaking and the nurses and their station down the hall guessed what had happened by my “EEWW!” as I came around the corner :)

Getting ready to go walking

The continued leaking/gushing was grossing me out and I didn't want to keep walking as I leaked so I stood and rocked over a waterproof pad for a while then decided to try the tub so I wouldn't notice and to relieve my backache (the backache stayed with me most of the whole labor). It worked wonders on my back but also slowed the contractions. Carolynn and Renee arrived while we were in the tub so they came in and said hi and Carolynn chatted for a bit to see what had happened so far and how I was doing. After that we were left alone for a while and we had the lights turned off so I could rest my eyes. I didn't want to slow the labor too much so we didn't stay in the bath too long.

The next few hours were a bit of a blur, we did a lot of different coping methods, I got a 1 hour nap, I kept contracting and we waited for progress. Around 2:30pm I decided to try the bath and rest in there for a bit so my mom, Carolynn and Renee decided to go do other things (mom and Renee went for food and Carolynn needed to nurse her son who was being cared for by a grandparent). In the bath it relieved my backache and the contractions were spacing out but after a little bit the contractions became extremely painful and super close together. I couldn't handle it so we got out of the tub. The contractions felt like they were right after each other and were so bad I began crying during them uncontrollably. Since it was so close to the 12 hour mark for the catheter and it almost seemed like I was hitting transition we had the doctors come to check me. They started by pulling on the catheter to see if it would come out. It did, but it hurt a bit. They checked me and said I was a generous 3cm, but not quite 4cm. They told us that they would wait an hour or so to give me a break before starting pitocin. I said that I would like to take nap during that time so we planned to start pitocin around 5:15 to give me a 1/ ½ hour nap (that is usually how long I sleep when left alone for a nap). Everyone left me alone to sleep and I slept for about an hour in spite of the contractions still being a bit painful.

Fever time

When I woke up (around 5:00pm) I decided to see if the contractions would pick up more if I was more active so we started walking the halls. The nurse told us that all of the doctors were busy at another birth and they could come see us about the pitocin when they were done with that. My contractions picked up speed and stayed about 2-3 minutes apart and mildly increased in intensity over the next 3-4 hours but I also developed a fever from infection. I began to lose strength and emotional stability and began crying almost uncontrollably and the contractions became stronger. I believe the strain of the fever on my body combined with the emotional nature of the situation led to my emotional break down which made it so that I couldn't handle the pain of the contractions, which made me more emotional, etc. Most of the labor I had been genuinely upbeat and normal (we had processed our initial grief before coming to the hospital) but I could no longer handle the strain at this point. I also was becoming too weak to stand/rock/kneel etc so I decided to try laying down even though up to that point it had prevented me from coping with the contractions. I had almost immediate relief due to not having to hold myself up and I had gotten to the point where I felt super cold (from the fever) so laying down enabled me to be kept warm in blankets. Around the time I laid down they started IV antibiotics and had me take Tylenol to keep the fever down (I had reached around 103 F). For a while the contractions stayed about 2-3 minutes apart but as time passed the became weaker and farther apart until around 9:30pm they were 5 minutes apart and not very strong (I didn't have to do anything to cope). I also became less able to handle pain.

Matthew's birth - Part 1

Warning: This is a very detailed telling of the birth story (it may gross you out), and will include pictures that may not be easy to look at.

On Sunday, October 4^th, 2015 in the morning we used the doppler we were borrowing to listen to Matthew's heart beat. A few days previous it had suddenly jumped to a normal heart beat of 150 bpm even though he had been happily having a heart rate of 90 bpm. The doctors had said that it looked like he just had a normal heart rate now and not to worry, but we were still concerned enough to listen once or twice a day. As the days went by it was slowly lowering and Sunday morning it was 70/130 bpm depending on where you listened (I believe that that was the lower/upper heart chamber reading). I was super worried and tearful, not sure what to do. Jon encouraged me to wait a couple of hours until 1:00 and listen again since we had an appointment with the OB the next day.

As we prepared for church I began to feel tired and weak (sometimes that happened in the mornings during the pregnancy) so we decided to stay home and I took a nap. I slept for 2 hours. Once I woke up we ate lunch and by that time it was after 1:00 so we decided to listen again. This time we couldn't find a heart beat no matter where we tried. He was normally easy to find.

Making calls and knitting his blanket

We called our OBs in Seattle (a 1 ½ hour drive away) and they said we could come straight there or we could go to the local hospital first for confirmation. We decided to go with the latter so we could have time to prepare and plan if he had indeed passed away. We arrived at the hospital and explained our situation and we were shown into a small room for an NST. The nurse was unable to find the heartbeat so she had the doctor come in with a portable ultrasound machine. The doctor (we were watching too) was able to see where the heart should have been beating and was unable to see any movement but, because it was a low detail machine she offered to order a better ultrasound for us. Jon felt that that would be best so we waited about 30 minutes for that. The technician told us that she would send the ultrasound to a radiologist but because she was just the technician should would not tell us what she was seeing (I understood). As she went along we were able to follow because of how many we had seen previously. We were able to see (and it was confirmed by the radiologist later) that he had one valve in his heart that was still moving a tiny little bit but nothing else was, and that there was no blood flow through the heart, vessels or umbilical cord. Our little guy was gone. We waited for a little while longer and the doctor came in to tell us that and that she would call the UW hospital to see what they wanted us to do. They were able to tell us that our preferred OB was not on call until Friday and that we could wait a day or two but shouldn't wait any longer than that.

We went home and began to try to make plans. After talking with our doula we called UW and asked what kind of induction method they would use (they said it would be the same as if he was alive) and also found out that they would recommend coming in that day because the longer we wait the more risk there is of infection and extra bleeding. We decided to go in that evening.

After a few hours of preparation and a few more of driving we arrived at the hospital. Because of our previous conversations they had a room and a nurse waiting for us and were shown in quickly. She told us that the doctors were currently in conference talking over possible plans for us and that they would be in soon to run them by us. The room was beautiful and spacious and on the end of the hallway so that we wouldn't be surrounded by other families. As we waited I began working on the knitted blanket that I had hoped to finish before his birth (I didn't get it done, but I plan to now).

Getting the IV placed

The doctors came in and introduced themselves. There was a head doctor and two residents (one or two of whom was the doctor(s) that ended up presiding of the delivery). They said that we would start by doing an ultrasound to confirm the one we had gotten earlier, do an external version if needed, and do a vaginal exam to decide our course of action. The ultrasound showed that he was transverse so we did the external version. The version was more painful than I had anticipated but it was successful. The findings of the exam were that my cervix was externally 1cm, internally (approximately) a fingertip, long and firm so we began an oral medication called Misoprostol that would begin the process of ripening my cervix. They said that it would be given to me every 2 hours as long as the contractions were more than 3 minutes apart and that it could be given up to 6 times. Jon and I attempted sleep at that point. Jon slept for several hours but I only got a catnap.

Ultrasound!

September 28 we got to have a full ultrasound again! This one is probably our last before he is born and it was so sweet to see it again.

Our little munchkin is still moving around and is still breech! He seems to love sitting in my pelvis with his feet up by his head. When they tried to get a good look at his hands for me they had trouble because his hands and feet were all right next to each other! He was also doing lots of breathing practice.

Looking at his measurements he is approximately 4lbs 4oz and is measuring quite small. His chest is 8 weeks behind, his belly is around 5-6 weeks behind and his femur and head look around 3-4 weeks behind. He is growing though! They would be concerned about how small his chest cavity is (his heart is big in comparison) except that his abdomen is small too. If only his chest was small they would be worried that he wouldn't have enough room to develop lung tissue.

The amniotic fluid measurement seems to be normal and at one point during the ultrasound he had his eyes open and we could see his eyes! It was kind of creepy :)

It looked like he was blowing us a kiss :)

The cysts in his brain appear to be really small, though they didn't measure them so we don't know if they have gotten smaller or if they appear smaller because his head is bigger. For his brain they were still unable to see the CSP and the ventricals are still dilated but that is nothing new, it just tells us that we are looking at other possible brain issues.

After the ultrasound we met with Dr Jolly again and let her know that we have now decided to do full code, full interventions. This means that they would do anything for him that they would for a normal child (oxygen, CPR, intubation, etc) but at the same time, we still want to follow Matthew's lead. For us this means that we are giving him every chance to fight for life, but if he doesn't want to fight then we will respond accordingly. She didn't even bat an eye. We love that about her! This is against her's and the neonatologist's recommendations but they are totally going with our lead on this without a fight. I think it helps that they have seen us working through this decision and that we are carefully considering the doctors' recommendations before deciding.

He even has tooth buds! They are the white below his nose.

We asked her if she could foresee any NICU doctors or any nurses refusing to do things like chest compressions and she said that no, she doesn't see that happening. They have been and will be told to follow what we want and that we have made these decisions carefully. We are really happy to hear that.

At this point we have an induction and a c-section scheduled for October 16th. What this means is that if I come in and his heart rate is great and he is in position then we will induce, but if either of those are not lined up we will do the c-section. She said (and I agree) that it would be easiest to schedule the c-section and cancel it than to try to schedule a last minute one. They are letting me have two (and possibly three!) support people with me in the OR! Right now that is going to be Jon and our birth photographer with possibly the doula (so that I can have someone with me when/if Matthew leaves the room with the other two). We are really glad that we will be able to have his first few minutes and hours photographed!

Our next few appointments are on the 5th and the 12th for regular check ins with the doctor to monitor blood pressure and whatnot and to make sure we have any questions answered or discussions talked through. After that there is only the induction/c-section! In some ways I hope I go into labor on my own the week of the induction so that I can know that we didn't bring him out to early but in some ways I hope he stays in there because it would be so easy to have everyone there already for the planned induction/c-section! I guess we will just have to wait and see what God and Matthew have in store for us :)

More Appoinments - Day 2

On Tuesday we had another Fetal Echo Cardiogram done. The cardiologist seemed to be very particular about what he wanted to see and kept sending the technicians back in for more footage! Probably a good thing in a doctor.

I am including a picture of what a normal fetal heart looks like (the labeled one) and what Matthew's looks like (the one with diagnoses written on the side).

He thought it would be best to start from scratch and tell us what he saw. Along with the previous findings (ASD, VSD, DORV, small left side, irregular beat, poor strength of beat) he said that the right side of Matthew's heart is too big and the left is now too small. Also, the Pulmonary artery's valve is small and the artery is narrow near the valve. He also said that the  Mitral Valve (between the upper and lower left chambers) is small and may not be functioning well.

What this means for Matthew is that the blood may not flow well into the Pulmonary artery, the left side of his heart may not work strongly enough and if after Matthew is born the left side is measuring this small there is nothing they can do for him. They are unable to make a small side bigger and a possible surgery on a normal child would be too complex for Matthew's weak heart to sustain.

It is like those "find the difference" pictures!

They said a normal left side measurement falls between -2 and +2 and that his right now is measuring -3.5. They said what they find after birth may be better because of difficulty measuring while in utero and/or it may improve by then but if after birth it is measuring worse than -2.5 they are unable to do anything to help it. Fixing the other heart problems won't fix that one.
He told us that before any medication is given we should wait to see how Matthew is doing for breathing and that if he is breathing well we can do the echo to see how his heart is doing. His recommendation (which we are going with at this point) is that if he is breathing but his oxygen is still low (not because of breathing) that we can do the echo within hours after birth to see if giving him prostaglandins to keep the "Patent Ductus Arterosus" (first picture, top right) open will help blood flow into the Pulmonary artery. Matthew will have an echo done within the first 24 hours no matter what, as long as he is stable.

Right now our biggest prayer requests for him are that his heart rate will increase to 110 or higher and that he will be head down, anterior (ideally so that he can be born vaginally), that after birth that he will breathe on his own and that the left side will be big enough to work with.

Please also pray for peace during this waiting time and that we would be okay with whatever God chooses to happen. Our induction date is set for October 16 provided he doesn't come on his own before then.

I am halfway done with Matthew's layette blanket! Only 12 more squares to make! I may decide to make it square instead though and only do 4 more :)

More Appointments - Day 1

This week we had three appointments scheduled, two on Monday and one on Tuesday. Because of this we asked some friends if we could stay with them for the night and they graciously hosted us!

His profile!

On Monday we first met with the Neonatologist. He was someone we hadn't met before and didn't really get anything new or helpful from him.

Next we met with Dr Jolly again and had a lovely session. We started out talking about him being breech or not (I am pretty sure he had been doing some flipping around) so she brought in the ultra sound machine. He is still (or once again) breech with his rear down and feet up. His heart rate was 95 bpm and his fluid amount is increased (from somewhere around 19 last week) to 23. She said that at 25 it is considered high. We asked her if she was concerned about his heart rate being so low and she said that because he was moving around and seems to be doing fine it is probably his current normal and not a sign that he is in distress or anything. We are going to do a full ultrasound next week to measure him and get more details.

That is his nose, cheeks, mouth and chin just to the right of center :)

Among our questions I asked if an external version (ECV) would be something we could do if he continues to be breech. She said that with his heart rate being so low they wouldn't be able to tell if the version was causing him distress so it would be inadvisable. She told us that knowing our wishes of having the best chance of getting him out alive, if his heart rate is this low when I go into labor or we want to do an induction she would recommend doing the c-section instead because they won't be able to interpret his heart rate to tell if he is in distress or getting oxygen deprived during labor.

We fully understand where she is coming from so at this point we are continuing our plans for a natural vaginal delivery but most likely (pretty much for sure) he will be delivered by c-section. The only way to not automatically do a c-section is if his heart rate is around 110 or higher and if he is head down and presenting well.

(Day 2 is the next post)

OB appointment

On Monday, September 14th, Jon and I went for a regular OB appointment.

Before I write about the appointment I want to do a little preface: during the 3-4 days before the appointment we had been hearing an unusual and extremely slow heart rate when using the doppler. While we were concerned about it we also know that there isn't really anything we can do at this point (if something is wrong) so we waited to talk to the OB about it until our scheduled appointment.

At our appointment we met with Dr Jolly again and began talking over our many questions (as usual!) that we had. We are so happy with her and with their readiness to work with us. They said that if we end up with a c-section that we can have our birth photographer with us! She also answered my questions about what to do if my water breaks. We also talked about Matthew's chances this early and how much of a difference a few weeks will make for his chances. She said that she isn't very sure but she is going to talk to the Neonatologists about that so that we can decide what to do should we find that he is compromised in the womb.

The latest growth photo from 2 1/2 weeks ago :)

We went over the birth plan we have written out and she had nothing negative to say about it and confirmed some of the points I had written. Since this is my first pregnancy I had no idea what to put in there but found a sample one that we adjusted until we were happy with it, I am so glad that she was too!

As we went along the subject of Matthew's heart beat came up and she said that we could do a little in office ultrasound to check up on him (measure fluid, see movement, confirm heart rate, etc). She brought in this little ultrasound machine and began working with it. Interestingly, using the ultrasound it was able to hear his heart beating as it has for a while (a specific arrhythmia) so she pulled the doppler off the wall to see what it would pick up and it picked up the same thing that our doppler did, a slow strange rhythm! She said that she isn't worried because the ultrasound is picking up his heart rate correctly and it is still a good speed! We are so relieved!

We were also able to see him open and close his left hand, open and close his mouth, and practice breathing! We were and are so encouraged to see that he is developing muscle tone and is learning to practice breathing, Jon and I are beginning to have hope that he will make it to the birth alive!

One last thing is that Dr Jolly recommended that we plan for him to be born around 39 weeks because the risk of stillbirth increases a lot after that point. For us that seems like a great plan because that would put him at 40 weeks for our original dates and 39 weeks for the adjusted date. We are now hoping to move to Seattle the weekend before that (just in case I go into labor on my own) then induce on the weekend nearest those dates (around the 16th or 17th). We are hoping to try all of the natural methods of induction before using pitocin :)

The only major down side to the appointment is that we learned that he is breech! Today (Wednesday) it feels like he still is, though he varies a lot in position (breech, diagonal, transverse). I am beginning some exercises to open my pelvis area to encourage his head to go there but if that doesn't do it I am hoping to get the midwife's help next week for more suggestions.

Please be praying that he moves head down and stays that way through birth and that his heart will be strong. Also pray that he will keep growing and will be as big as possible (the bigger he is the better his chances are).

Cardiology

Sorry it has been such a long wait! We had our most recent cardiology appointment on September 1st but I have spent 5 days out of the last two weeks with a fever and couldn't even get out of bed, let alone write a post :)

At this meeting we had an echo cardiogram again and also got to meet with the same cardiologist, Dr Bhat. The echo went smoothly and we loved the technician. She was super sweet and talked with us and made us feel like friends.

A friend hosted a small baby shower for Matthew and I!

Pretty much everything looks the same as the last one! There aren't any changes for the worse and the only new thing is that we have been hearing an irregular heart beat for about a month and they were able to explain that it appears that the normal "ASD" (whole between the upper two chambers of the heart) that everyone has appears to have a large flap (that would normally close it after birth) which seems to move enough to irritate the right or left sides and cause that side to contract too soon. For Matthew it is okay because his heart is realizing that it was too soon and telling that side to wait it's turn. This causes a quick heartbeat then an extra long wait for the next one so that the next one is in time with the rest of the heart.

She told us that as long as it is stopping the early ones we don't need to worry about it but that we can be on the watch for it to start doing all early beats for a long period of time. At that point I think he would need intervention of some sort.

The winners of the balloon diapering contest :)

Since that appointment (sometime last week) she called us personally to tell us that after reviewing the first and second echo she believes that the heart lung artery is having consistent back flow (we had known that) and that it is actually a good thing for the balance of Matthew's heart (I can't remember the reason though!). She told us that she would recommend that as soon as he is stabilized after birth that we start an IV through his umbilical stump to give him prostaglandins to keep the valve open to allow that flow. She said that by giving it right away it will begin benefiting him before we are able to tell if that is what is needed or not. She said the only side effect she is concerned about is that a small number of babies can have more lethargic breathing while on this medicine and that they will be on the watch for that to dial back how much he is getting if it effects him that way.

A few of the attendees

She said another possibility of why that is happening is that the vessel may be small farther down and if that is the case that would probably be his first heart procedure to find a way to reroute that blood back to the lungs again for better flow.

We are super excited by what she told us. Sometimes it seemed like she has been the least optimistic, more hesitant to have hope. Not in a bad way, just realistic I think. But with that phone call we really feel like she is coming on board with us about interventions since she is talking about starting medicines and even a possible procedure! We are super thankful for that!

Our next cardio appointment is this coming Tuesday, September 22nd.

A demonstration of mom's gift - a cocoon!

Opening gifts!

A sweet outfit, one of many! We are so blessed by what we were given.

Follow up ultrasound

Before you start reading, I have to apologize about the long posts! There is so much information from each appointment!

On August 17th Jon and I headed up to Seattle for another ultrasound and to meet with Dr Jolly and a Neonatologist.

When we arrived in Seattle we were over an hour early so we did a little walking around before heading to the appointment. When we got there we found out that our appointments had started not at 11am (like we thought) but 10am! I had gotten a text reminder a few days before the appointment that hadn't included the ultrasound! We had even arrived in Seattle in time for the appointment but didn't want to be so early. They managed to squeeze us in anyway because of a cancellation.

We went to our local fair on Thursday as a memory maker with Matthew

The technician was not our favorite, she was nice, but she was too quick and didn't tell us all of what she was looking at so we didn't catch all of what we were seeing.

After the ultra sound we were shown into a room to wait for the doctor. At this point we didn't know who we were going to see but I was pretty sure it wasn't going to be Dr Jolly because of what we knew of her schedule. But to our joy it was her! She has switched days with someone else and that made it possible for us to see her. She also came in with the neonatologist that we were going to see, they decided to come in together (that was nice).

The neonatologist's name is Dr Batra and we really liked him! Right off the bat he said that he had read through all of the notes from all of our visits and that he felt like he knew us already. I was super impressed that he would take the time to read everything. He verbalized where he thought we were for making decisions once Matthew was born and he was right on.

At that point he walked us through what everything would look like at the birth and after with Matthew and what it they would normally do. He started out with worst case scenario then moved to the more positive. As we went along we asked questions and he asked questions. We are really happy with what we learned from him and how he listened to us and explained everything. He also didn't push us to make immediate decisions and even encouraged us to think about it before deciding anything.

They had camels there this year

At the beginning of the meeting Dr Jolly told us the ultrasound findings, then after talking with Dr Batra we went over them a little more. She told us that the cysts in his brain have maintained size since last time which means that with his head growth they are a lot smaller in comparison, they once again could not see the CSP, there is extra fluid in the cisterna magna (new), it does still look like he probably has horseshoe kidneys, his chin is a little on the small side still, the fluid around his right lung seems to be gone, and his right hand appears clenched.

She told us that not being able to see the CSP and with some extra fluid in the cisterna magna there are probably other brain abnormalities going on as is common with babies with Trisomy 18. She also said that his right hand now appears to be clenched which can develop as the pregnancy progresses and that is why we haven't seen it before. We were so happy to hear that the fluid around his lung seems to be gone, that is such a good development!

He is continuing to grow at a normal rate but a week behind his adjusted due date. He now weighs 2 pounds 8 ounces! His head is about a week ahead of his other measurements and his abdomen is a couple weeks behind but she said that she isn't too concerned about it.

Over all we are really happy with what we heard, it was mostly good news and we really liked what Dr Batra had to say.

For those of you that don't know about our spontaneous trip to Seattle on the 11th, I had been having some small signs that could have meant that I was heading towards (but not in) preterm labor and after consulting with a nurse we decided to have an internal exam done. We met with the midwife and she did the exam. She said that my cervix was about 50% effaced, externally 1 cm dilated (but internally closed) and my cervix was in a central location. With these findings we decided to head to Seattle for some observation. They did a 1 hour nonstress test and also did an exam. They said that my cervix had stayed the same in the hours between exams and that since I wasn't having any contractions that we could go home. They told us to come back if I had 6 contractions an hour for 3 hours and not to worry about it before then.

It was good to get that information, though it did feel a little bit like a waste of time. They said that it was good to come in and get checked just in case. Now we know what to look for.

At the end of our appointment with Dr Jolly on the 17th she said that she could check my cervix for me if I would like. I decided to go ahead with that so that I could relax if it had stayed the same. She said that it is the same or a little better and that it will fluctuate over time. That was such a relief for me! I have felt a lot better about how things are going since learning that.

We now have most of our birth plan written out and have our go bags packed and ready to go just in case he decides to come early.

Just for fun we got a little temporary color added to my hair in one of the booths at the fair (they used chalk!)

God's provision

As we began to plan for Matthew's arrival we had thought about how we wanted to plan it but without the finances to live it. We were hoping (best case) to move to Seattle together around 39 weeks gestation and give Matthew 2 weeks to present himself. At that point we would induce.

Looking ahead we had only 1 week of vacation from Jon's work and no way to save up the money we would need for 2 or more weeks leave of absence (depending on Matthew). We knew approximately how much it would take to cover all of our bills here and for groceries there (we most likely have a free place to stay) but with Jon's wisdom teeth needing to come out, our car needing new parts and all of the trips to Seattle in the mean time there was no foreseeable way for it to work!

We began to pray for a way and God has provided it abundantly!

We have been given so many gifts! The gifts have come in the form of money, gift cards, prayer, hugs, etc. Some from family, some from friends, some from groups and some anonymously! In addition to that we have just found out that Jon got 2 weeks vacation time instead of the 1 that we thought!

We have been able to get Jon's wisdom teeth removed, purchase the car parts and have the finances or vacation time to stay 4 weeks in Seattle! I am crying with joy and awe as I write this. What a gracious God we have!

In our short marriage we have had many times of having to trust God to provide for us when we had no way that we could see it coming and each and every time he has given it to us one way or another. Sometimes ahead of time, sometimes at the last minute.

We praise God for his gracious gifts and for the people around us who love us so much!

Keeping Going

I am thankful today that our little one is still with us. Each day is another day we have had with him and we are trying to rejoice in each one. Our day to day lives have not changed that much but our mindset and future look so different now.

Each day we have to trust in God's goodness and plans for us. There are days (probably about once a week!) when I feel like it is too much, it is too hard but God always pulls me through and gives me peace.

I admit that I haven't been very good about spending time reading the bible and praying lately and that has (I believe) been part of why it has been so hard for me to work through this. My sweet husband became aware of this and encouraged me to spend more time in prayer and to make sure to read my bible. In the last week or so I have been trying to do that more and have felt so much more peaceful about everything. I still have to moments when it is hard but in between I am resting in God's grace and goodness.

Around the time of our last appointment in Seattle our midwife let us borrow her spare doppler to use when needed. That has been such a blessing! Even though I feel him move around, his movements are light and hearing his heartbeat is so reassuring!

Unfortunately in the last few weeks we have caught more and more that his heart will go into short segments of missing beats (e.g. 4 separate beats missed in 10). We were able to confirm with Ali that that was what we were hearing this Wednesday. We are not professionals so we do not know what this means for us but with it increasing in how often it happens and even how long it happens we are beginning to wonder if we are losing him slowly. I am grateful that he still moves around though has good days and bad days and good weeks and bad weeks as far as how much he moves (and reacts to external things). Feeling him move is something I will miss very much if he passes on.

Each day is a new day. A day to learn to trust God, to learn to give up the dreams that I had, for something unknown but better from Him. Sometimes it is hard and sometimes it is easy. A lot of the time I had no idea how much I wanted those dreams and I believe that God is using this time to teach me to let go of those tightly held dreams.

Our prayer requests right now are: Continued grace and strength for each day, that the fluid around his lung would become less and would not move to his other lung, that his heart would become stronger and stop missing beats,  that the cysts in his brain would continue to get smaller and that if God chooses for Matthew to pass away that we would be content with that. We also want to praise and thank God for the many gifts that we have received from those around us (among which were the pictures in this post) and for the love and support that everyone has shown. We are not through this yet but God has always provided what we have needed right when we have needed it.

Photos courtesy of Ordinary Joy Photography

Good news and bad news

Warning! Long post! :)

We (Jon, my mom and I) started our trip into Seattle on Monday night so that we wouldn't have to get up at 3:30am to be there on time. We were hugely blessed by one of my mom's friends who opened up their basement/mini apartment to us at the last minute!

Waiting for the first ultrasound (heart)

After an interesting nights sleep (mom and I attempted to sleep in the same bed but her snoring kept me awake and my tossing and turning woke her up!) we made our way to Seattle Children's Hospital where we ate breakfast.

Our first appointment was at 8:30am for the fetal echo cardiogram. I am not super familiar with just the heart so I was able to see a few things but over all just watched and waited.

Once that exam was done we were moved to another room for our regular ultrasound check up. The woman doing the ultrasound was wonderful and explained what she was looking at or for and what she was doing. I was encouraged by what I saw in a few places and couldn't wait for the official information!

In the second ultrasound room

After she was done we waited a while to see if either of the doctors (OB or Cardiologist) wanted to take a look themselves with the equipment and after a bit Dr Bhat (the cardiologist) came in and took a quick look.

As we waited in the meeting room for the big meeting, mom and I worked on our perspective knitting projects for Matthew. I was able to finish his jacket! It still needs buttons but all the knitting is done and the strings are woven in, yay!

Dr Jolly (OB), Dr Bhat (fetal cardio) and a nurse came in all together and sat down to talk about the findings. Dr Jolly started out by giving a quick run over of changes and new information while the nurse and mom took notes.

Let's start with the new information they saw:

It looks like his kidneys may be fused in what is called horseshoe kidneys. They appear to be functioning normally (the bladder is full and the amniotic fluid amount is normal) but are attached at the top.

His belly size seems to be a week smaller than the rest of his body.

They were unable to see something called CSP (Cavum Septum Pellucidum) which is a normal space in the brain. They said it may be that the cysts are getting in the way of seeing it or it might not be there. I don't remember why it being missing would be a bad thing, but it would be so we are hoping that they are simply not able to see it.

He has fluid around his right lung (more details with the heart info).

Isn't he so sweet?

Previously there but changed:

They told us that his chin is now within the range of normal (it had appeared small previously). His Choroid Plexus Cysts have gone from being 2.4x2.5 cm down to 1.4x2 cm! So not only have they gone down in size but his head has grown so they are a lot smaller in comparison to space availability! He also now has appropriate sized genitalia (previously seemed small).

Updates and growth info:

Matthew is looking like he is now weighing 1 pound 8 ounces, which means he has grown almost a pound in 6 weeks! That means that he is still about a week behind in size (from our later due date) but that seems to be consistent (and consistency seems good to me!). His amniotic fluid is normal (important).

The sweater is ready for buttons!

And for the heart (previously not very clear info known): The good news is that he does not appear to have an AV canal and all of his pathways into and out of the heart seem to be working fine! He does have an ASD (normal in everyone but closes at birth, which doesn't always happen in babies with extra chromosomes) and a VSD. The VSD is there and is close to the center of the heart but should be okay (fixable with surgery)as long as nothing changes. His greater vessels are not transposed but are something called DORV (double outlet right ventricle) which means that instead of one from the left side and one from the right side (both near the center) they are both leaning to the right side. They also appear to be fused near the heart (abnormal but probably not a big deal). Also, the left side does appear to be smaller but is still working okay.

The bad news is that his heart seems to be not pumping with as much enthusiasm as it should and there is some possible back flow in one of his greater vessels and the valve on it seems to be thickened (could mean restricted flow into it).

What this means:

Over all he is looking good but looking at the heart, his visible defects do not account for the decreased energy of the pumping effort.  They said that most likely that is caused simply by him having Trisomy 18 (it effects how things work over all). That is possibly a warning sign that his heart may not be able to keep up. With the fluid build up around his right lung they informed us that most likely this is caused by the heart function being low though there are a few less likely causes. They are concerned that if the fluid continues to build up and goes around the other lung or the heart the function of them will be compromised. If it builds up too much around the lungs his lungs will not be able to grow and will always be small. With increased fluid where it shouldn't be, he is also at risk for something called Hydrops which would compromise him.

So over all he is looking good but there are a few warning signs that may mean an increased chance of him being stillborn.

After we tried to absorb all of this we began asking the questions we had come up with over the weeks. As we talked we let them know that even though they have recommended no fetal monitoring during labor and no C-section we would like to have full monitoring and have a C-section performed if he shows that it is needed to keep him alive. They took this super well and Dr Jolly throughout the meeting included the possibility when talking about what things may look like after the birth.

We took him to the zoo after our appointments :)

As far as we can see, right after the birth the NICU team is going to be able to look him over and tell us what they can do for him. They will be able to tell us if nothing is going to help, if he needs oxygen, if he can stay in the UW NICU after being stabilized or if he needs to be transported to the Children's NICU, etc.

We have been told that they will not do any action (to intervene or not to intervene) without us giving consent and will make sure that we know all of his options each step of the way so that we can make the decisions.

Over all we are super happy with our team. They are not simply writing him off and are super willing to work with us no matter which path we take. We are truly grateful that God has provided such willing and wonderful people to work with us!

Our next appointment is scheduled for 8/17 to do an ultrasound check up, that with the OB and meet the Neonatologists! 2 weeks after that we are going to have another fetal echo cardiogram done to see if anything they saw yesterday was a one time thing or if things are changing for better or worse.