Elizabeth Archives - Day 20

I've decided to try and write these updates during the day...the situation always seems less bleak after a good night of sleep! Additionally, some of you might get the email in time to pray for the upcoming day's events.

Since yesterday's mid-afternoon update, not much progress has been made. They were able to get another long-term IV in her right arm, allowing them to (finally!) remove her groin IV. Now she can kick her feet around at will (which she has been doing frequently to express her irritation). Sadly, the overnight nurse thought Elizabeth needed a "back-up" IV and found a vein on the side of her head. Now she can't turn her head or wear any of her cute hats!

They managed to fit her in for another try at placing the feeding tube past her stomach. Sadly, they failed a second time, and in trying, caused her stomach to start bleeding. Shortly after the procedure, she began vomiting blood and blood clots, enough that her blood count dropped low and she required yet another blood transfusion. To help get the blood out of her stomach, they had to put another tube through her mouth and down into the stomach. Today, a pediatric gastroenterologist will see Elizabeth to figure out where the bleeding is coming from, how to stop it, and figure out why the feeding tubes keep getting stuck in her stomach.

I briefly mentioned yesterday the problem with Elizabeth's electrolyte levels. I thought it would turn out to be a lab error...but I was wrong. The reasons are still unclear, but Elizabeth's sodium did, in fact, get dangerously low. Often, a level that low would produce a coma or seizure. Thankfully, neither of these developed. The Team is working hard to find out why the sodium got so low, and it may be something as stupid as giving her the wrong IV fluids.

I haven't mentioned this before, but since she began opening her eyes, Elizabeth has been periodically making strange eye movements. I thought they were probably just "ICU baby" eye movements and didn't make a big deal of them until they started becoming more frequent yesterday. So ophthamology and neurology stopped by to see her. The ophthamologist said that everything looks good with her eyes and agreed that the types of movements I was seeing are common in sick newborns. The neurologists agreed, but recommended that we exclude the possibility of seizures with a brain wave scan (an EEG) and to some time in the future do an MRI to see exactly what's going on with the brain. The EEG was performed yesterday, but the results aren't back yet. We are reassured by these findings.

Watching Elizabeth gagging on the tubes and frequently vomiting has been one of the hardest aspects of our journey so far. When you can't do anything to soothe her, things start feeling hopeless and unending. We are trying hard to keep perspective, but these "light and momentary afflictions" seem too heavy and long-lasting.

On the brighter side, Elizabeth is now three weeks old (technically not until 4:02pm). There were times earlier in her hospitalization where we weren't sure she would survive this long. For this we are truly grateful. Additionally, one of our favorite nurses is taking care of Elizabeth today and has NO other patients to distract her.


For your prayerful consideration:

1. That Elizabeth might be able to find a comfortable position and some sweet sleep
2. That the bleeding from her stomach lining would stop and a cause easily found
3. That her white blood cell count would come down and remaining infections cleared out
4. That her mother and father's hope would be restored and faith buoyed

Sincerely,

Matt and Sara

Elizabeth Archives - Day 19

Hello All-
Our email server was down yesterday, hence the combined report for today...

After Elizabeth's chest tube almost fell out the other day, the doctor-in-me decided to become more involved in Elizabeth's care. The hospital doctors and nurses are wonderful and competent, but an extra set of eyes and ears seems only beneficial. So I have begun scrutinizing her labs and X-rays, and this morning started attending "rounds." "Rounds" means the 10 minute block of time where "The Team" (nurses, on-coming attending, out-going attending, residents, fellows and case managers) gets together to discuss the patient's progress and care. The MDs were very open to having me there and allowed me to input and question their plans. As a result of my prodding, I think they are moving faster on some things than they had planned initially.

Yesterday, Elizabeth went to the Interventional Radiology labs where they attempted to place yet another feeding tube past her stomach and into the intestines. For the first time in 12 years (according the head MD), they failed! So they left the tube in her stomach only and decided to try feeding her for the fourth time. And for the fourth time, she started throwing it all up again. The Team was planning to give her another day to see if her stomach starts working better before asking Interventional Radiology to try again. I politely reminded them that we've been trying this approach for almost a week and insisted that they make the Interventional Radiology plans now.

While sitting with her yesterday, Sara noticed that whenever Elizabeth cried both of her legs would become slightly purplish, as if the blood wasn't getting there appropriately. The doctors suspect that large vein feeding into the heart may have clotted off and they are running tests to see if this is true. In the meantime, I convinced them that the IV in her groin needed to come out and be replaced elsewhere. I'm writing this message while they are doing that procedure.

Despite all of this, Elizabeth is hanging in there and continues to look cute. Her weight loss has stabilized. She gets less irritated by diaper changes, the blood pressure cuff and temperature checks. She recovers more quickly from each episode of vomiting. Yesterday, Sara very boldly trimmed Elizabeth's finger nails for the first time. We finally found some onesies that snap down the left side (to allow an exit for her chest tube) and at the bottom (for the heart monitors and IV tubing), so starting today, she may be able to wear clothes!

Sara and I are hanging in there as well, thanks no doubt to your sustaining prayers. It is hard for us to pray sometimes, and we appreciate you taking these requests to God on our behalf.

Thanks a million,
Matt

Elizabeth Archives - Day 18

My, my, my. Today was a toughie. It started with attempts to place a new feeding tube through Elizabeth's nose, through her esophagus, her stomach and into the intestines...at 4 am. You can guess what she thought of that! After an hour of recovery, they changed the IV line that enters her femoral vein near her groin...also fun. She got to sleep until early afternoon, when we got her out of bed for me to hold her. While she sat fussing on my lap, I noticed that the fluid draining from her side was frothy and noticed the sound of air escaping around her chest tube. In case you are wondering- that's not good at all. I called in the nurse and asked her to get the surgeon and some other staff. Squeamish folks stop here! The chest tube had been moving around enough to stretch the opening into her chest and the stitches holding it in place had broken. We caught it just prior to falling out (which would have been a disaster). Ideally, the chest tube would have been pulled out and a new one placed. Unfortunately, Elizabeth's body is quite small and the available spots to put the new one have already been used up. So they cleaned the tube and area as best they could and sewed it back into place. Now we hope it doesn't become infected! She became anemic enough overnight to require another blood transfusion, they still haven't managed to get the feeding tube passed her stomach, her groin IV isn't allowing them to draw blood through it (one of its main functions) and the same IV seems to be obstructing venous outflow so that her left leg keeps turning slightly bluish.

As you might have guessed from the lead-up, tonight's prayer request list is somewhat lengthy:

1. We're bummed. Today feels like four steps backward and it seems like our last step forward was quite awhile ago. We need better strength and stamina for this ICU roller coaster.

2. Low red blood cells: the constant decline in her red blood cells mostly comes from the blood they need to constantly remove for cultures and tests. She's now required two transfusions. The most recent drop in her count was faster than expected and we're still not sure where its going.

3. IV access: the IV line in Elizabeth's groin is very important and is supposed to do three things. First, allow several different medications and solutions to be administered simultaneously. Second, allow easy drawing of blood samples without have to stick Elizabeth with a needle. Lastly, it allows them to measure her venous blood pressure. But it's not working for drawing blood currently and so every test Elizabeth needs requires finding another vein and putting her through the pain of sticking her. The IV line is also a major infection risk. Since they changed the tubing this morning, her leg turns blue in certain positions. Pray that they will know whether to find a new site or stick with this one.

4. Infection: Elizabeth continued to have fevers today and her white blood cells are still very elevated (a sign of infection). A clear source for this has not yet been found. We also found out that she will need at least 6 weeks of intravenous antibiotics for those blood bacteria she had last week. What this means for our hopes to bring her home before I go back to work is unclear.

5. Chest tube: We used to be ultra-concerned about how much fluid was coming out. Our new worry is whether the chest tube itself its coming out! We're very nervous now about holding her, afraid of dislodging the stitches. It could also be the source a new infection since it was exposed to the air.

6. Nutrition: Tonight, they're going to try a fourth time to get a feeding tube past the stomach. Because the tube passes through the nose and down the throat, it rubs constantly and produces a nearly continuous gagging sensation. Babies get used to this eventually, but it is very uncomfortable at first. The plans to start feeding her have been delayed now three days as a result of not getting it to the right spot. Pray that it gets there and that Elizabeth will get used to its presence quickly.

Enough for now. It's easy to lose perspective late at night. We have truly experienced the fact that God's mercies are new every morning. And we're still trusting in his faithfulness.

Matt and Sara

Elizabeth Archives - Day 17

The highlights and lowlights:


~They had to stop feeding Elizabeth because she continued to throw up throughoutlast night and today. Finally they gave her some meds intended to help her tummy hold onto the Portagen and tomorrow they'll replace her NG tube with one that will go all the way in and out of her stomach and drop the food off past the point where it is causing her to vomit. Hopefully this will keep more of the nutrients moving through her. Please pray that this is effective. They may also reassess the decision to feed her at all before her chest-tube drainage has stopped. They may decide to backtrack and hold off future feedings until she's completely "dry". In that case they would still give her the nutrient rich fluids she was previously receiving. We don't know what is best for her. Our end goal is for her fluid drainage to stop altogether and for her to be able to breastfeed as soon as possible. God knows the best path toward this end and we're asking Him to give the doctors wisdom.



~After my email last night regarding our worries about how to comfort her, I think we made a breakthrough today. After being awake all day (from about 10am until 5pm) Elizabeth was clearly distraught. She had a fever and all her vital signs showed that she was in distress. Finally, the nurse suggested I hold her (something I had been hesitant to do since she was throwing up and I didn't want to make her more uncomfortable). The moment I put her up on my shoulder (see the attached picture) she immediately went to sleep! I had to put her down after about an hour for a weighing and blood draw, but she went right back to sleep and stay that way- all evening. It was wonderful to be able to comfort her. It is my prayer that even in my absence she would feel cradled all night by her Heavenly Father.


We will all sleep well tonight,

Love,

Sara & Matt

Elizabeth Archives - Day 16

Hi Friends and Family,


Today was a better day...Grandpa Peterson drove over from Clovis to visit, bless us with his presence and his guitar, and take my mom home for some much needed rest. Grandma & Grandpa Harms and Auntie Julia (who's feeling much better!) came up and the whole family had a great time of prayer and worship. We have so much to be thankful for and we were able to express our gratitude for God's faithfulness.


Elizabeth is progressing. They gave her an NG tube (down her nose and into her stomach for direct feedings) and have started her on "Portagen" (an elemental diet)...which they tell us tastes pretty gross. As a result of that and because her digestive system hasn't done ANY work in the last 15 days, her stomach is basically NOT excited about the activity, so a few tablespoons have come right back up. That's typical (they tell us) so we're praying she'll acclimate to the whole eating thing pretty fast and hold down the much needed nutrients. So far, her fluid output is also decreasing...also a good sign. Please pray that it continues to decrease even with the increased input of food. Later tonight they'll take out her only IV (just in case it's harboring that pesky bacteria) and try to start another one so she can continue to receive the antibiotics and other necessary fluids.


Both Matt and I held her today; a wonderful treat. We look forward to the days of "passing her around" for all our friends and family to enjoy, but until then, we are savoring the moments we have with her. During these days of hospitalization we've begun to realize how insecure we feel about how to take care of her...how to recognize if she's comfortable, irritable or in pain...and often feel inadequate to meet her needs, since they've been so well-met by such competent nurses and doctors for the last two weeks. Without a machine to tell us if she's ok, how will we know what to do?!?! We would appreciate your prayers for grace during this unique transition into parenting, as well as for confidence in the God-given intuition that (we've been told) all parents have. At the same time, we're still working overtime to touch and talk to her as much as possible and trust that a bond is developing from more than just our end.


Finally, Matt's department has been absolutely incredible...loaning us a call-room in which to take breaks and rest while we're at the hospital, giving Matt the go ahead to take the past 2 weeks off while still getting paid as well as numerous visits, cards and presents from colleagues and faculty. He'll start his 2 weeks of vacation Nov. 1-13th, and we would really like to bring Elizabeth home during that time. Will you join us in praying that God would speed her recovery in order to allow us some "family time" before Matt resumes work?


As we spent time in prayer today, we specifically thanked God for each of you...you have been integral to our survival over the last weeks. These emails have been forwarded to literally hundreds of people, many of whom we've never met, who have carried this burden with us through prayers for our daughter and our family. We are forever grateful and deeply touched.


We love you all,

Sara (for all three of us

Elizabeth Archives - Day 15

Hopefully you have all remembered to set your clocks back tonight- hooray for an extra hour of sleep. After today, we sure could use it! Today we got our first "new parent" taste of what its like to have a difficult-to-console child. For some reason, Elizabeth cried a lot and couldn't find a comfortable position. And no matter what we tried, we couldn't make it better (certainly raising our stress level).


Be praying for:


1. With the anti-chest drainage medication turned off, Elizabeth's fluid output has gone back up, nearly doubling (from 100 to 200cc/day). It's not a big jump and still a very manageable, but we'd hoped for continued improvement.


2. Despite the three antibiotics, that pesky bacteria continues to be found in blood stream. She is not acting seriously infected, leaving the docs stumped.


3. Suzie, my precious and very helpful mother-in-law, will be returning to Clovis tomorrow...leaving me to fill her giant cooking/cleaning/caring shoes.
4. Her voice was a little louder today, but still not what it should be. Keep praying that the cords and nerves will heal completely.


5. Tomorrow, we will again gather in her room for church, hoping to have another time of peace-bringing worship and prayer.


Love you folks,

Matt

Elizabeth Archives - Day 14

Elizabeth is 14 days old today! Throughout her post-surgical course, she has been on a medication called octreotide to try and slow her chest fluid drainage. Today, the doctors stopped that medicine to see if her fluid output would continue to decline. We'll know tomorrow.


I got to hold her all afternoon, and learned first hand just how irritated babies become when their diapers are wet! Fortunately, one of the antibiotics makes her pee bright orange, so it's pretty easy to see whether she's wet or not.Even better, the hospital is going to great lengths to "normalize" Elizabeth's environment. They've brought in a bed that looks more like a crib and given her a mobile. They also said we could begin dressing her in clothes as the pictures reveal.
She also passed her hearing test with flying colors, which might explain why she gets super calm when her mother is singing her lullabies.Current issues include:1. Continued reduction of her chest tube drainage2. Successful treatment of the bacteria that were in her blood stream3. My sister arrived from Germany yesterday with a cold! Pray that she will recover quickly so that we can let her spend time with her niece.
Thanks for your support,
Matt and Sara

Elizabeth Archives - Day 13

Sara and I have heard that many of you are on "pins and needles" wondering what's the latest with Elizabeth. Several of you have suggested brief daily updates on her progress to reveal God's answers to prayers and guide prayers for the future. There's nothing we like better than talking about our new daughter, so here goes...(you're going to have to tell us when to shut up, or at least ask to get off the distribution list :-)


-Elizabeth had one of her chest tubes removed. The fluid draining from that one had dwindles to almost nothing. A little bit of morphine, a few snips on the stitches and it was out!


-Her fluid output was lower than yesterday's by about 50ml!


-Her blood cultures continue to grow small amounts of a bacteria called Staphylococcus aureus. It is very resistant to several usual antibiotics, so they already had her on two powerful antibiotics called vancomycin and gentimicin. Now they are adding rifampin which will turn her urine, chest tube fluid and even her tears bright orange. While we anticipate the successful treatment of this bacteria, it can stick to and destroy heart valves, lodge in joints and cause bone infections. Pray that none of these occur.


-Her bacterial infection reminds us that she has lost a lot of immune cells and proteins out her chest tube fluid, and as a result, is mildly immunocompromised (more susceptible to bacteria and viruses that we, or any staff, might bring with them). Pray for her protection and our continued health so that we can continue to visit and hold her.


-Sara got to hold Elizabeth again for several hours today...made possible by her continued healing from delivery.


Time to sleep,

Matt

Elizabeth Archives - Day 11

Dear Friends and Family,
Thank you all for your continuing prayers. Today, Elizabeth's chest tube drainage has continued to slow and her hand infection has nearly resolved. As an added bonus, her breathing has improved enough that they took her off the breathing machine altogether! As you can see by the photos attached, this has allowed us to start holding her again...a very good thing for our parent hearts.

Keep up the good work...things are heading in the right direction.
Love,
Matt and Sara

Elizabeth Archives - Day 9

Dear Friends and Family,
Today, Sara and I invaded Elizabeth’s room armed with all four grandparents, a guitar and a stack of worship songs. We cordoned off her room with curtains and spent some time
worshipping and praying for Elizabeth and over her. We could definitely feel God’s presence and peace there, and I feel our hope has been given a shot in the arm.
The last 24 hours have been better for Elizabeth. Yesterday, her right arm (which had two important I.V. lines in it) became hot, red and swollen to twice its normal size. This is due to a cellulitis (a bacterial infection of the tissue just below the skin) and she had to have antibiotics started to treat it. Both I.V. lines had to be removed and new sites found. They tried both sides of her forehead (ouch!) that required shaving off some of her cute hair. Eventually they had to put it in her groin.
This morning, her right foot started swelling and turning red as well, requiring the removal of that I.V. as well.All of that minor drama seems forgettable though in light of the fact that her chest tube drainage as been steadily decreasing over the last twelve hours! Things couldn’t have started to turn around at a better time- the doctors we’re starting to discuss re-operating!
While the medical interventions may be playing a role in her apparent recovery, we’re giving God the credit tonight. Keep those prayers coming.
Gratefully,
Matt and Sara

Elizabeth Archives - Day 7

Dear Friends and Family: Before retiring for some much needed rest, Sara and I wanted to update you on Elizabeth’s status. First off, she is now one whole week old! It is hard to believe that her delivery was only seven days ago- in some ways it seems like minutes and in others, nearly forever.
Since her surgery three days ago, she has had a ventilator assisting her breathing and a tube exiting her left chest to drain off lymphatic fluid. Attempts so far to remove the breathing tube and to get the fluid drainage to slow down have been unsuccessful. The longer the breathing tube stays in, the more at risk she is for several problems, including pneumonia and permanent damage to her trachea and vocal cords. Each time the doctors change her ventilator settings to move toward getting her off the breathing machine, her left lung collapses, apparently because her chest is filling so quickly with lymphatic fluid.
The drainage of lymphatic fluid also continues. In fact, her drainage is the most anyone has ever seen. She’s leaking about 1.3 liters per day, a huge amount when you consider that represents approximately 1/3 of her body weight! As I mentioned in our last message, this fluid contains clotting factors, proteins necessary for fighting infection and the nutrients necessary for growth. Given how much fluid she is losing, the doctors are trying to keep up in replacing these necessary components, but it is unclear how long that can continue.
Would you join us in praying that this fluid drainage would stop? If there’s time left over, pray that she would be spared additional complications. And if there’s still time, pray that Sara and I would not lose heart in the face of bad news. Your prayers, kind emails, cards and phone messages have encouraged us through some very dark hours this week. We thank you from the bottom of our hearts.
Love,
Matt and Sara

Elizabeth Archives - Day 4

After a long morning spent in the waiting room, we were blessed to hear that Elizabeth's surgery went well. The surgeon was surprised to find that her coarctation was more severe and of a longer length than pre-operative testing had indicated. Despite this, he seemed optimistic that he'd done all the necessary repairs. Taking a cue from my brilliant sister-in-law, I found a web image of Elizabeth's surgery and altered it to show the normal anatomy, the severity of Elizabeth's narrowing, and finally an approximate sense of where her stitches are.

Although we are rejoicing that she came through the surgery, this feels like the first step on a very long and bumpy road. Pre-surgery, the doctors predicted abnormal fluid build-up around her left lung and that started to occur even before the operation was over. If it keeps up (and they expect it to), she could be in the ICU for a very long time waiting for the leaking to heal (months?). The fluid that is leaking contains the proteins necessary to protect against infection and to stop her blood from clotting inside her vessels (which could lead to strokes). They will try to replace those proteins (amazing that they know exactly which ones to give her!), but she's at high risk for those problems.
Elizabeth will probably be on the breathing machine and high doses of pain medication for the next two days. We'll visit her several times per day, but plan on using this time to catch up on the sleep and processing time we need.
Pray that God will rejuvenate our bodies and spirits sothat we'll be strong and ready to spend lots of time with her after she wakes up.Thank you again for bearing this heavy load with us. We still trust that God has some purpose in all of this and are relying on his daily mercies to get through it.
We love each of you,
Matt and Sara

Elizabeth Archives - The Arrival of Elizabeth Joy Harms

Dearest Friends and Family,

Sara and are beside ourselves with happiness to announce the birth of Elizabeth Joy Harms! She came at 4:02 PM on October 14th, weighing 6 pounds, 13 ounces and measuring 19 inches in length. We had hoped to call many of you and announce our news, but the days since her birth have been somewhat consumed.

Late Thursday night, just as Sara was chastising me for not having made enough progress in our birthing workbook, she started having very faint contractions. Within 3 hours, they were growing in strength and happening every TWO minutes. We hurried to the hospital and even though we were in earlier labor, Elizabeth's heart rate wasn't acting "optimally" and they admitted us for observation. Six hours, a few contractions and an epidural later, Elizabeth's heart rate suddenly plummeted and before we could react our room filled with people in scrubs preparing to wheel us into the operating room for a crash C-section. Just as the "wheeling" began, her heart rate popped back into the normal range and surgery was averted! We (i.e. Sara) labored another six hours and then it was time to push. The bed was being set up for that purpose when Elizabeth's heart rate suddenly plummeted again. This time it didn't come back up.


Within seconds, the room filled with scrubs a second time, and eight minutes after the trouble started, Elizabeth was delivered by a very dramatic forceps procedure. A very skilled team of pediatricians whisked her away immediately and did something that got her heart goingagain and got her to take her first breaths. She perked up enough that Sara got to hold her for a few brief minutes before they took her off to the Neonatal ICU for the testing her heart and aorta needed. Since then, Elizabeth has remained in the ICU under very close observation. The tests on her heart confirmed that surgery to fix her aorta is needed, and they plan to perform the repairs this Wednesday. In the meantime, she'll remain in the ICU for observation and medications to keep her heart working properly until fixed. But overall, the doctors are very happy with how she's doing otherwise. The ICU has unlimited visiting hours and we've been making great use of them. Naturally, it's very hard for us to see our daughter attached to lines and tubes when we desperately want her home with us.Some major praises!1. Elizabeth survived not one, but two, very scary moments before delivery.2. Aside from the aorta issues soon to be fixed, she's doing very well.3. We live two blocks away and will be able to visit more frequently than typical.4. Great family and nearby friends who have already proved a tremendous blessing.5. A mother-in-law willing to stay with us and to help me care for Sara.
Some things to pray specifically about:

1. Rest and a quick recovery for Sara (and me), so that we have energy for surgery.

2. Rest and a quick recovery for Elizabeth so that she's ready for surgery.

3. Rest and good judgment for the surgeons who will be involved in her surgery.

Of course, there's much more to share that will have to wait until we have time. For now, we're hunkering down, getting as much sleep between ICU trips as we can and preparing for the big surgery on Wednesday. Our phones (home and cells) are technically on, but the ringers are mostly off. So feel free to try calling. We'll only answer if a) we're here and b) we've got the emotional and physical energy to chat.We love you all immensely and thank you for your concerns and prayers. If you're just dying for more information and can't reach us, feel free to call our tremendous point person, Abby Haynes.

Off to hold the baby.

Matt, Sara, and Elizabeth

Elizabeth Archives - Pregnancy Update

Hello Everyone,


Last week was a very busy one for Elizabeth and us- one echocardiogram, one visit with the OB, one fetal non-stress test, and an ultrasound to assess her growth! To briefly summarize, there is still evidence of the coarctation of the aorta, the cystic hygroma, and although her head and body are growing appropriately (she almost weighs 6 lbs!), her limbs are seeing the effects of Turner's (they're much shorter than they should be).


These findings combined with the meetings we've had with the doctors have given us a better idea of what to expect after birth. If things don't change:



- There is no reason for a C-section unless something else comes up, and the actual labor & delivery should be able to progress as if our pregnancy were completely normal.

- As long as no other complications arise, we should be able to hold Elizabeth for "awhile" after delivery, but no one knows whether that "awhile" is seconds, minutes or hours.

- Soon after birth, she will have to go Neonatal ICU for testing to see if her aorta will be sufficient to supply her body with blood. Dr. Hornberger, our pediatric cardiologist (fun note - she was quoted multiple times in the most recent issue of Newsweek!) thinks all signs are pointing to needing early surgery, but these tests will tell. Best case scenario in her mind is being able to put surgery off until 6-8 weeks after delivery. Depending on which part of the aorta is affected and how long the involved segment is, Elizabeth will either need repair through the side of the chest (much easier on her) or through the sternum (a much bigger deal). The mortality from this surgery is still about 10%, a number which doesn't seem that great to us. The longer they are able to wait to do surgery, the quicker the recovery should be - older babies heal faster. Because she has Turner's however, she may have a slower recovery due to her compromised lymphatic (drainage) system.


Naturally, we're ambivalent about the potential of surgery and its risks, though we've had several months to prepare for that possibility. Right now, we're actually finding it much more emotionally difficult to think about her being taken away from us to the ICU. Our perspective may seem a bit "off," but after waiting so long for her to arrive, our hearts are heavy about the fact that our bonding time may be shortened. Will you pray with us that whatever time we're given with her will be maximized for her benefit and for ours?


An answer to prayer - We've found a highly recommended pediatrician willing to make room in her schedule (her practice is officially closed) for Elizabeth once she's arrives, and in the next week or two we'll be meeting with her to talk plans. And as the clock ticks down, please join us in praying for the right mix of obstetricians, nurses, residents and medical students to be on duty when we deliver. In addition to the hospital staff, Sara's mom will be driving over from Clovis to help us with the birth.


As the day for her arrival approaches, we feel more grateful than ever for the brilliant and skilled doctors we have - literally - at our doorstep (since UCSF is only a block away!) and while we believe they are reading the reports as accurately as they know how, we also know that it is God who gives life and calls those things which do not exist as though they did. (Romans 4:17). So even as the odds for a completely healed Elizabeth look slim, we still believe that God's plan...whatever that looks like...is perfect. Hopefully the next email you receive from us will be to say we're in labor or Elizabeth has been born! Thank you again for your prayers.


Love,

Matt, Sara & Elizabeth

Elizabeth Archives - Pregnancy Update

Hello Family and Friends,

Matt will follow up with a more formal explanation of the findings, but the short story is, there is a definite Coarctation, and the left heart is still small, though not definitely problematic...(they'll do tests after she's born)
In light of these findings, we've got a better idea of what things will look like after she's born. If things don't change, the prognosis for birth is:


As long as there are no other complications, I'll be able to hold her for a few moments (don't know how long) right after birth, then she will definitely have to go to the NICU or the Cardiac ICU where they'll test her vitals and give her a test to see how soon she'll need surgery. From what I could tell, Dr. Hornberger (her Pediatric Cardiologist) is leaning toward her needing surgery soon after, but it could be anywhere from a few hours to 6 weeks. If she doesn't need immediate surgery and has no other complications, she should be able to come home with us for a while before the surgery. If she does need immediate surgery, they'll determine which one (the less dramatic entry through the side, or the open heart surgery through the chest wall) and then she'll be in the NICU (or CICU) until she's recovered. (the longer they are able to wait to do surgery, the quicker the recovery should be - older babies heal faster...though because she has Turner, she may have a slower recovery due to her compromised lymphatic (drainage) system)


Ironically, the toughest part is hearing that she won't be able to stay with me after birth and possibly won't be able to come home with us. My heart is heavy about this. Part of me wants to just go in and take her out now, just so we can deal with a "definite" scenario. Waiting and not knowing when she'll come, and then after that what will happen, is a little tough.


We're doing alright. Tomorrow we've got another apt. with my OB - will you pray that Matt can come? My last appt. with her was really frustrating as she breezed in and out and I couldn't ask questions. Matt will be able to remember what we need to ask her and hopefully will be able to decipher her med-speak for me.


We'll have an ultrasound on Friday - just to measure her size and see what's going on with the Hygroma and the Cerebellum...


Will you pray also that we would have favor with the Pediatricians that we've emailed? Our OB has recommended us to some Sr. Faculty (who would be better at dealing with a Turner case and all the complications that brings) but so far none of them have responded to our requests for them to open their service to us (they're technically "full" and not accepting patients, so this is how it's done). We'd like to get in with one of them and have an appt. before Elizabeth is born so we can set up the game plan for how to treat her after birth. So many things to think about.


Matt went straight from our apt. to his Wed. Conference, so we haven't had a chance to process, so as a result I'm not really wanting to get on the phone...I'm not doing badly, just don't have much to say. Thanks for your prayers. I was reminded in the moments before we left for the Echo...God's plan is perfect. We still believe this.


Love you all,

Sara

Elizabeth Archives - Pregnancy Update

Hi Everyone,


It's been a while since we updated you, and thankfully, that's because there's been nothing dramatic to report! Our daughter continues to grow...proving by her kicks that her current dwelling is shrinking fast. Our last ultrasound indicated that she's in the 56th percentile for growth, and showed evidence that she's thriving. It also revealed that her Cystic Hygroma (the fluid collection at the back of her neck) is shrinking! We've now made it past the 35 week mark and if necessary could safely deliver her without many of the risks associated with premature delivery. These are all direct answers to prayer.


In a few weeks we'll have another appointment (they come every 2 weeks now) as well as another Fetal Echocardiogram. This will be our last chance to see what's going on with her heart and we're praying for continued healing. And we are so grateful for your prayers. A few nights ago, our God-daughter, Quinlee, (who is 2) called (with the help of her parents) and on the answering machine prayed, "Lord, bless Baby Harms!" On our way out of church last week, a gentleman stopped Matt and I and said, "The Lord told me to pray for your baby's salvation...so we're praying for her health and that she would come to know God at an early age." Perfect strangers are being moved to pray for our daughter...God is so good to us.


Overall, Matt and I are doing really well. The bible verse that has best expressed my heart lately is Psalm 30:11-12 ~


You have turned for me my mourning into dancing; You have put off my sackcloth and clothed me with gladness, to the end that my soul may sing praise to You and not be silent. O Lord my God, I will give thanks to you forever.


I feel like we've turned a corner, from mourning to rejoicing and we are eager to see what God does in our daughter between now and the day she arrives. In the meantime, we're painting, carpeting, installing furniture, washing clothes, sewing bedding, and last Saturday, we went to a class where we finally learned how to have a baby!


Finally, we have a name! We've chosen Elizabeth Joy Harms. Elizabeth is my middle name and means, "devoted to God" and Joy, well, joy is what we feel about her!


I've attached a picture of our progress...both in belly size


With Love,

Sara, Matt & Elizabeth Joy

Elizabeth Archives - Pregnancy Update

Hi Everyone,


For the 2nd time this month, we are writing to share some GOOD news! This afternoon, we had a follow-up echocardiogram to check the progress of our baby's heart development. Thanks to our daughter's kicks, punches and twisting, it took 2 1/2 hours of scanning to obtain the pictures they needed. The official statement from the pediatric cardiologist was something like, "I'm not saying that you're all free and clear, but this is definitely a better picture than we were seeing last time." To translate- "Somebody's been praying, because things are looking up!"


To be specific, we've been following the size of the first portion of the aorta and the left ventricle with great interest. If the aorta stayed as narrowed as it looked before, it would need open heart surgery to reconstruct it immediately or soon after birth. If the left ventricle continued to stay small even as the body grew, it would risk a condition known as "hypoplastic left heart syndrome," which could be fatal or require even more dramatic surgery or even heart transplantation.


Today, the first pictures of the aorta looked so good and close to normal that they spent 40 minutes trying to get a different angle to confirm that fact! They were unable to get the exact confirmatory angles they wanted, but were optimistic that the coarctation has "definitely NOT worsened, and appears to have gotten some better." We also learned that the left ventricle is still smaller than expected for this stage in development, but nothing near the range of being "hypoplastic." The fact that the left ventricle remains small leads them to suspect a small amount of coarctation is still present, but we won't be able to tell until birth.


Simply put: by the end of our first echocardiogram, we were on a trajectory toward open heart surgery immediately after birth and ran the risk of potentially fatal hypoplastic left heart syndrome. After the improvement seen today, hypoplastic left heart seems extremely unlikely to develop and open heart surgery may not need to be immediate, if it's necessary at all. In addition, if she ends up needing surgery, it might be a much simpler operation than they previously expected.


As you can imagine, we are thrilled! In the days after we first received the news of our daughter's diagnosis, we believed that God wasn't done knitting her together, and asked you to pray toward that end. Indeed we are seeing evidence that the One who says He knits her together, isn't limited to fetal development timelines. Thank you for continuing to stand with us in prayer as well as for your encouragement and support. Our daughter's life and future are literally being changed as you pray.


Gratefully yours,


Matt, Sara and Baby Girl Harms

Elizabeth Archives - Pregnancy Update

Dear friends and family,

Our prayers are being answered. Based on last week's ultrasound, we know our little one is growing! Though she still has a short femurs and humeri (signs of short stature - associated with Turner), overall, she is in the 66.7th percentile! At this news, my OB responded that she was "delighted with her growth! That's really good for a baby with Turner." I'm sure it can't hurt that her parents are a little above average for height. :)


She's still really active, which is an important signal to us that she's thriving. Since still birth is still a higher risk for babies with Turner, her daily kicks and twists, though beginning to feel a bit more like an alien in my belly, are extremely reassuring.


Next week we'll go in for a follow-up fetal echo (heart ultrasound). We continue to pray that her aorta is getting stronger and healthy and that the left side of her heart would grow to it's proper size. Thank you so much for your continued prayers, encouragement, and well-wishes. We are daily being blessed by our community of friends and family.


Have a wonderful weekend,

Love,

Sara (for all three of us)

Elizabeth Archives - Pregnancy Update

Hi there,


So after much pestering, we finally got around to taking an updated "pregnancy picture" and since 6 weeks has passed between the last one and this one, I think it's apparent, our little one is growing! She's kicking all the time now, and sometimes I poke her back and get a response. I doubt she's really aware of our little "game" but it's fun to imagine her shadowboxing in there...Speaking of the little boxer, I've also attached a picture of her, taken in 3-D, during our fetal echocardiogram. (one blessing in doing all these tests!) If you're not able to see her, (it's a bit like those pictures you have to cross your eyes to see...) here are some clues...her head is at the top of the picture and her belly below. we're looking at her left side and front, and her left arm is reaching up to "shade her eyes" while her right leg is curled up in the background. Hope that helps...


We had our follow-up ultrasound last week and it went smoothly. Unfortunately it verified that all the abnormalities are still there. The left heart is still small, the ascending aorta is still small, the Cystic Hygromas are still there and seemingly stable (not growing or shrinking much - good news). Unfortunately they also were able to conclusively identify inferior vermian agenesis (non-growth)...the cyst in her cerebellum is still there.


Not much is known about any link between Turner Syndrome and the cerebellum issue, so it's likely not associated, and in fact, there is also limited knowledge about the impact on her mental development after birth based on the discovery of the agenesis, so we'll just have to wait and see.


Though we were disappointed that there wasn't any change in her symptoms, Matt and I are doing pretty well. We don't have any more tests for a while, and have decided to turn our attention to a little painting and furniture moving while I can still participate. Today we celebrated our 6th wedding anniversary as well as Matt's first Father's Day, though Matt's on call and I led worship at church, so we played it low key until we can really celebrate with a little getaway in July. In a few weeks I'll fly out to Winnipeg to meet my very first niece...Eiley Katherine, and soak up all the mothering advice I can from my big sister and Matt will wrap up his 2nd year of Residency...Just 2 more to go!!


We are grateful for your continued prayers for us and for our daughter. So far no name yet, but we'll keep you posted!


Hope this email finds you doing well,

Love,

Sara (and Matt & Baby H.)

Elizabeth Archives - Pregnancy Update

Dear Friends and Family,


Sara and I cannot express our gratefulness for your thoughtful emails, cards, words, and tears. More importantly, your prayers for daughter's health and for our strength have buoyed our spirits immensely. We feel loved on every side and surrounded your network of support. We appreciate each member of that web as never before.


As the diagnostic process progresses, we plan to send out brief updates about our daughter's condition (and our mental health). In the last week, the result of our karyotype testing has definitively shown a diagnosis of Turner Syndrome. The cells in a normal female contain two copies of the X chromosome, while in Turner Syndrome, one copy of the X chromosome is missing. It is caused by a malfunction in cell division very soon after the sperm fertilizes the egg. The results of missing one X chromosome are highly variable, ranging from stillbirth to only short stature and infertility. Given the early presence of lymphatic blockage and blood vessel abnormalities seen on our ultrasound, our baby is most likely on the more severe side of the syndrome. More time and more ultrasounds in the coming weeks will clarify just what we can expect.



A few prayers are already being answered!

~ We have begun to feel our baby kicking on a regular basis (in utero Tae-Bo classes?). This has helped tremendously with our bonding process.

~ Meetings with my work colleagues have gone very well and I will be able to take the time necessary once our baby is born.

~ As we have prayed for our daughter and her future, we are encouraged by the knowledge that God has a specific plan for and call on her life. Turner Syndrome doesn't have to exempt her from that, and we are filled with greater hope than we expected.



Please continue to pray for:

~ Healing of her heart (Want to get specific? The left ventricle is hypoplastic, the aortic valve bicuspid and the aorta itself is coarcted).

~ The disappearance of the cyst in her cerebellum by our next ultrasound.

~ Complete resolution of the fluid collections that indicate her lymphatics aren't working properly.

~ Continued understanding from the colleagues who cover for me when I leave for each doctor's visit.


We are praising God for each of you! We are holding up pretty well considering, and aren't screening our calls so rigorously anymore. So if any of you were hesitant to call, don't be!


Love,

Matt, Sara and Baby Girl Harms