The Dream

So I woke up at 4:00 this morning feeling my belly to make sure Matthew was still in there. I had a horrible dream that Matthew was born and I only spent about a minute with him before handing him over to the nurse to take away. I'm not sure if he was alive or not at that point, but it was very upsetting and has been bothering me all day. I know that when Matthew is born things will be very different and I will get to spend as much time with him as I need to. Also, tomorrow will mark the 6 week point until he is due, so things are starting to become even more realistic and emotional.

At the end of the dream, the scenery fast forwards from giving Matthew away to being blessed with delivering our fourth child, a little girl we named Elizabeth. I'm not sure what all of this means, but I pray that getting it out on virtual paper will ease the fears I have experienced today.

Matthew has been very active the last couple of days and I have been praying daily that the Lord will help him to turn around so that we can experience the best delivery possible and make the most of our time with him. I have also heard Abbie saying a couple of prayers in the back seat of the car asking God to heal Matthew so that he can be with us forever. It really breaks my heart and I hope that our prayers are answered. We have an appointment with the OB on Monday, so I will let you all know how it goes.

Jenn

Precious Things

Click the "Play" button on the gabcast below to hear Matthew! (You may need to pause the music player at the bottom first.)
Gabcast! MatthewHeartbeat #1



I was sent a blanket for Matthew some months ago through an organization, I'm almost positive it was called Hippocrates Children. Of course I can't find the info for it now in my emails or online, but the sister of a woman at my mom's church made it and sent it. They make these "little hero" blankets for sick children. It hangs over the side of the crib that may never be occupied by Matthew. I look at it every time I walk into the room that he would share with Raleigh and am very saddened by knowing that the child it was made for may not be cuddled, rocked to sleep, or fed while wrapped up in it. He is my "little hero" for surviving as long as he has under such tight circumstances and I will forever be changed by having him in my life. The blanket will continue to hang, and the crib stay intact as long as he still has a chance for a miracle.

As I noted briefly in a previous entry, we made a Baby Matthew Bear at the local Build a Bear. Raleigh slept through the process of picking out a bear and outfit, but Abbie had a great time. She picked out a little star and made a wish for Matthew, placing the star inside the bear. We saved one for Raleigh to do as well. We also purchased a recorder piece that we recorded his heartbeat on at the last ultrasound and is inside Baby Matthew Bear's stuffing. While Baby Matthew Bear resides in the crib, I'm sure he will make his way into my bed and arms to comfort me in the coming months.

Thank You!

I just want to say thank you to everyone!
For your continued prayers, support, words of encouragement, stories, advice, and everything else you have had to offer! I would hope that any parent who has to go through the pain of preparing to lose a child or losing a child would have as many caring people as we do behind us.

Lord, I thank you and I praise you for the time you have given us so far with our precious son! We will continue to cherish each day until You decide that the time has come. We feel blessed to be Matthew's parents and love him so very deeply.

Maternity Pics by Gioia Photography

http://www.gioiaphotography.com/

Hiccup!

I think if there were such a contest, baby Matthew would be the winner of the "Most Hiccups in a Day." A minimum of three times a day he is at it. Because of his position, it's not the most comfortable feeling in the world, however, it is very comforting to know he is still doing okay.

The further along we get, the more worried I become of losing him while he is still in my belly. If he were to sit on his umbilical cord for an extended period of time, chances would be very high that he could cut off any support that he gets from the placenta through the cord.

....so keep those hiccups coming!

Matthew doesn't have very strong movements, but when he does, they can get painful! Over the last couple of days some part of him starts jabbing into my ribs, so I have to gently push him back down. And then there are contractions...Braxton Hicks to be more specific...to prepare my body for the end of this wonderful journey...not so wonderful feeling.

These are the little things during a pregnancy that some may find annoying, as I do at times, but wouldn't take them away for anything!

To C or not to C

I had a monthly appointment this morning at my OBs with the goal of setting some type of plan for delivery. Not as easy as I thought, which is very frustrating for me. I want everything to be planned out and as perfect as possible without any regrets.

I was hoping to delivery locally and to be induced a little early so that we would have a doctor that we know and who understands our situation. They told me today they are not able to induce me, because my high risk doctor in Orlando wants me to have a spontaneous labor(which under regular circumstances is what I would prefer).

The second issue is that Matthew is breech and highly unlikely to turn since he is so squished inside of me. My local OB said they likely wouldn't deliver a breech baby regularly and that in that case I would have to deliver in Orlando. (I have only seen three of the five doctors over there, 1 time each. Definitely not familiar with them.)

I asked her what the risks are associated with having a regular delivery when the baby is breech, and she said that his head can get stuck. Definitely not an option! Even though we know what Matthew's likely fate is, we would very much like to hold him and be with him while he is alive. I don't really want a c-section, but if it will spare him trauma, me trauma, and let us hold him alive, to me it seems the right way to go. Plus we could schedule the doctor that we want.

So to C or not to C? I feel just as unaccomplished with that plan as I was when I woke up this morning. The doc said she will have to consult with my high risk doctor in Orlando, and to wait and see how everything progresses, so it is out of my hands for now. Errrr. I do start going there every two weeks now, so hopefully we will have some better answers by then.

Today

Now that I have caught everyone up on the details, it is 1 PM on Sunday, February 15th. Just some notes:
-Abbie and Raleigh are aware that baby Matthew will go to Heaven after he is born. Abbie seems to understand, but to Raleigh they really just seem to be words.
-We went to the Build a Bear factory and made a Baby Matthew. Abbie and Raleigh went with me to my last ultrasound where we recorded Matthews' heartbeat and saved it inside of the bear so that we can hear him when we give the bear a squeeze.
-We have decided to deliver at Holmes hopital here in town. It will be much easier to coordinate care for the children if we are in town. We will not be attmepting to resuscitate Matthew by any artificial means after he is born, so the NICU will not be necessary, unless of course God perfoms a miracle and his status turns significantly.
-We have picked out an area at Florida Memorial Gardens in Rockledge where we will have him buried.
-Still no middle name-struggling with that one.
-Tomorrow is my appointment with my regular OB who will be delivering Matthew. Hopefully we will get some details about delivery covered. I am now about 31 weeks and clueless about the big day.

On the bright side, my Dad has Abbie and Raleigh at the lake near our house on their first fishing expedition with him. It is starting to rain, so hopefully it is short lived and doesn't cut their day short because they have been so excited about catching a big fish!

I will continue to update the blog as often as new information arises, or I just feel the need the get something out.

Winnie Palmer

Our first appointment at Winnie Palmer was in December. Josh was not able to go due to work obligations, so I woman from my mom's church that I have known for as long as I can remember volunteered to go with me. (Thanks Michelle for the support!)
Imagine my surprise in the exam room when the Dr. came in - and it was Dr. Carlan! A prayer answered! He explained most of what I already knew about Matthew's condition. As he did the ultrasound, things had changed a bit since we had our last one a month before. And not for the good.

Dr. Carlan explained that Matthew had a bell shaped chest. In normal development, the chest and the abdomen should have been the same width. Matthew's chest was very small, and it got larger as it got to the abdomen. The Dr. said there was no way of knowing what would happen when Matthew comes out. From a medical standpoint, our son had no chance. However, he said he is sometimes surprised by babies who have this appearance and come out breathing on their own. We would just have to wait and see. He suggested comfort care would be the best way to go, which is making Matthew as comfortable as possible during his short life.

Matthew's kidneys no longer looked ok. One of them was large and echogenic, or bright. (Bad sign). The other was just small and fluffy looking. Not normal either. His bladder was no longer enlargened. It appeared that his kidneys had stopped functioning and that whatever urine was in his bladder just absorbed into his body. There was less than 2 cm of fluid around Matthew which explained why I was so tiny for how far along I was. He had no padding around him- it was literally all baby.

Dr. Carlan gave me a great sense of peace that day. He laid his hand on me at the end of the appointment and said that everything would be okay. He said I was making the right decision. I felt such a strong connection with the doctor and really felt that God was speaking through Dr. Carlan that day. There is no other way to explain how amazingly spiritual he felt to me. I did not end up asking about amnioinfusions. I felt so much peace with the idea of just letting everthing happen as natural as possible for the remainder of the pregnancy. No more testing, needles, medical intervention. Just letting Matthew be at peace and go home to be with the Lord after he was born, if He so chose. I was so strong, rarely crying, just knowing what was best. Others commented on how strong I was throughout the whole pregnancy, and I couldn't really understand it myself. But I knew it was God.

If God brings you to it, He will bring you through it.

New Hope?

I wasn't ready to give up.

I was at gymnastics with Abbie and Raleigh one Saturday. I started talking to another mom in Raleigh's class and told her about the baby and our situation. We exchanged numbers to get together sometime.

Just a short while later, I got a message from her. She said she had a good friend who was a nurse in the NICU department at Holmes and wanted to talk to me. I decided it had to be a message from God to place those women in my life during that time.

I called and talked to the nurse. She used to be the head nurse in the NICU at Winnie Palmer in Orlando before moving to Melbourne. She urged me to go see a doctor that she used to work for at Winnie Palmer- Dr. Carlan. She also suggested that even if Matthew's kidneys couldn't be salvaged, we could help his lungs develop by getting amnioinfususions.

You see, a baby's lungs develop in the womb by drinking the amniotic fluid around them. The fluid also gives them room to expand. The kidneys were no longer the big issue. If Matthew didn't have fluid to take in, his lungs would not develop and he would have Pulmonary Hypoplasia- small, underdeveloped lungs which can be fatal. The most important time for lung development was between 18-24 weeks. I was around 22 weeks- already into those important stages.

We decided to give it another shot. I called my regular OB and told them I would like to see Dr. Carlan and to have amnioinfusions considered. The nurse said she would send over my records, but that it would be highly unlikely for me to see Dr. Carlan. He was the head of the department at Winnie Palmer, and she said none of her patients have seen him in over two years. I told her I still wanted to change, I just didn't feel that our current specialist was on our side.

Baby Matthew. Now What?

We named him Matthew- Gift from God.

I told the doctor that I wanted to see the fetal surgeon in Tampa even though the levels were high. The kidneys still looked excellent, and I knew of one other person who he performed the surgery on that also had high levels. If he did it for her, why not me?
I had all of my records sent to a fetal surgeon in Tampa. I spoke with the Fetal Care Coordinator there who said the Dr. needed to review the records, but that I should be able to get in that week. She would call me by the end of the day to confirm the appointment time.
I waited...amd waited...she called me back at 5:30 PM. She said after reviewing the baby's records, the surgeon said there was nothing he could do. Nothing?! As she began explaining things on the phone, I couldn't hold back the tears. What did they expect me to do? Carry a child who would die after he is born? I just couldn't understand. She said the urine tests just weren't good enough that they felt surgery would not be of help for the kidneys at this time.
I couldn't even finish talking to her. I simply said "thank you" and hung up the phone. I laid on the couch and cried, trying to get it all out before I had to pick up Abbie and Raleigh.

Results and MORE Taps

So the results for the bladder tap came back on the high side. The amniocentesis was perfect, so we passed that requirement. To get the most accurate results, bladder taps will be performed 2-3 times for the freshest urine. I was very concerned that the results would not get better, but one of the nurses eased my mind by telling me that he first tap is stale urine which can raise the electrolyte levels.
We scheduled a second tap, which Josh was not able to be there for. Timing was not good, because Josh had to go to training three hours away for a month. I was very lucky to have my parents around for support at this time.
The following week, the doctor called to tell me that the results were even worse this time. I started crying. I asked for one more chance, not having much hope. The Dr. explained that this was the last one he would do, and that he did not expect results to improve.
The last bladder tap was the longest and most painful one yet. He had to insert the needle in several (5 I think) different places because the angle was bad. The results came back the following week higher than ever.

Oh The Pain!

Two days later we were back at the perinatologist's office. In order to be eligible for surgery, the baby had to have a normal karyotype (spelling?) to rule out Downs Syndrome and other similar problems, be atleast 16 weeks gestation (right there at this point), and have electrolyte levels within a certain range to show good kidney function.
He inserted a large needle through my belly and into the baby's bladder. He withdrew 7 syringes full of urine (what a relief to baby!)and also took some amniotic fluid to test for Downs. It would take atleast a few days to get the results back. If they were good, we would be scheduled to go to Tampa to see the fetal surgeon.
Josh drove us home and I was miserable to say the least! Horrible cramping, dehydration, nausea....extra strenth Tylenol, and bed rest.

Visit with the Perinatologist

On October 28th, Josh and I had our first meeting with a perinatologist(specialist for high risk pregnancies) who flew into the area from Tampa a few days a week. He seemed ok, very knowledgeable. The nurse conducted the ultrasound initially while he viewed from the other room. The Dr. came in and explained that he believed our child had a urinary tract obstruction, also called Posterior Urethral Valves, or PUV for short, as long as the baby was a boy. If the baby was a girl, the case would be slightly different. Because the baby was not in a favorable position, they were not able to positively identify the gender at that visit. The Dr.continued with the assumption that it was a boy. He explained that the obstruction caused urine to fill up in the bladder and back up into the ureters and kidneys. He showed us the large black circle on ultrasound which appeared to be the same size as the baby- it was just the bladder filled up with urine. They also found that he had bilateral clubbed feet. The feet were turned inwards from lack of room to grow. Not a big deal, he would just need special casting after birth. From my research, I already had a good bit of knowledge on the subject and he did not have to explain a whole lot. The kidneys looked very good, and there was still a lot of amniotic fluid around the baby, though it was decreased.

The Dr. gave us our options -including termination-which in his experience he said that most parents would opt to terminate their pregnancy with this discovery. That, however, was not an option for us. This was our baby and we were going to carry him no matter what. God gave him to us for a reason and I intended to follow His plan. Doc explained that there was in-utero surgery available for this condition to relieve the obstruction. Even if it was successful, studies showed that 1 in 3 children would end up needing a kidney transplant. To me, it was the right path to take. Surgery was worth the risk to save our son.

The Googler

A little bit about myself- I'm a huge Googler. With the little bit of information that the ultrasound tech gave me about a distended bladder and a cyst on the kidneys, I took it and ran with it. I was constantly on my computer tring to figure out what it all meant. After many hours of research over just a few days time, I came acress a website called the Fetal Hope Foundation. On there, it described five different conditions that can be treated with in-utero surgery or intervention. The first term I came to know was called LUTO. It stands for Lower Urinary Tract Obstruction. I had not a clue if this is what our baby had, but it would explain the distended bladder and did have to do with the kidneys, though not a cyst. Now I would just have to wait to see the specialist to find out the truth.

Fast Forward to Our First Ultrasound

Around week 15 (October 22nd 2008) I went in for an ultrasound due to some light spotting I had one night. They did not find a cause for the spotting, but they did find another problem. The ultrasound tech said it looked like a cyst in the kidneys and that the bladder was distended, but could offer no other information. There were no doctors there at that time to explain anything. The nurse told me not to worry, everything would be fine and they would get me a referral to a perinatologist for high risk pregnancies. I wanted to cry just knowing that there was a possibility of something being wrong, but held back my tears since I did not know if the problem was even a serious one.

Where it all began...

It was August 18, 2008, the day before my husband's (Josh) 27th birthday. What a surprise to him (and me!) when I took a pregnancy test on my lunch break at home that day and it was clearly positive. There was no anticipation of waiting 2 minutes, nevermind 30 seconds. The test already knew the answer, no thinking involved. With thoughts running like wild through my head, I drove to his work with gift bag in hand and presented his early birthday present. He was absolutely thrilled! Me...not so much. I wasn't ready, but warmed up to the idea after a couple of weeks. The doctor gave me a due date of April 18th, 2009 (by ultrasound) which would make me 7 weeks already. I disagreed with the date. Going by my last menstrual period, my due date would be calculated at March 31st, my dad's birthday. We would have to wait and see if I came early......