Monday, October 31, 2005
~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,
Sara & Matt
Sunday, October 30, 2005
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
Saturday, October 29, 2005
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,
Friday, October 28, 2005
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
Thursday, October 27, 2005
-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,
Tuesday, October 25, 2005
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.
Matt and Sara
Sunday, October 23, 2005
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.
Matt and Sara
Friday, October 21, 2005
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.
Matt and Sara
Tuesday, October 18, 2005
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
Monday, October 17, 2005
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
Tuesday, October 4, 2005
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.
Matt, Sara & Elizabeth