in love

This picture was taken today. I LOVE IT! Curly Q had just pulled out her feeding tube, so I asked if I could take a picture before the nurse put it back in place. That way you can see her massive double chin! She has a "tape mustache" that helps her nasal cannula stay in place.

Due Date

Yep, that's right. Today was Curly Q's due date. Tomorrow she will be 10 weeks old. I have mixed emotions about this day. Ten weeks ago, the NICU staff told us to tentatively plan on her expected come home date as her due date. I thought in my mind that 10 weeks was so long, Curly Q would be home long before that. Here we are on her due date and she isn't even close to coming home. Curly Q has made some progress (see previous post), but there are so many steps that she still needs to take before she comes home.

The last several weeks, I've noticed my attitude shifting. I've felt a lot more frustrated. I found myself several times a day saying that Curly Q was "never" coming home. This was compounded by the fact that everyone always asks "So, when is she coming home?" or "I thought you said the end of March. Why isn't she home yet?" I honestly appreciate everyone asking how we and Curly Q are doing, but I sometimes need to bite my tongue to prevent from screaming "I don't know when she's coming home!" The last 10 weeks have been very emotionally taxing on me. I personally think it is more difficult on me than when I was in the hospital.

Last night, I was at Curly Q's bedside holding her against my chest. She was completely relaxed and sleeping while I rocked her. I was overcome with a feeling of gratitude for this little baby. I have forgotten how lucky we were in this whole ordeal. There was a very real possibility that I was going to lose the baby. Then even after she was born, there were tons and tons of risks of things that could go wrong. And she seems completely healthy except for underdeveloped lungs. I have spent too much time with being negative and frustrated that I have forgotten to feel grateful. So last night, as I rocked my baby, I felt so grateful that this baby was protected and looked after, that our prayers were answered. So, my new goal is to be grateful Curly Q is in a fantastic facility with experienced doctors and nurses taking care of her. I need to stop focusing on time and be grateful she's doing as well as she is.

Curly Q is now weighing in at 7 pounds 4 ounces and is 19.5 inches long. The doctors and nurses always comment on how big she is. She is a happy baby, but when something is wrong, she lets you know. One of the nurses called her a Princess that often sends them looking for the little pea hiding underneath stacks of mattresses. I'm glad she has that feisty side that lets them know something isn't right. She is still fairly stable on breathing. She is still on a high flow nasal cannula with an oxygen pressure of 4, instead of 3. They're going to try to wean her back down to 3 sometime this week. They've started the transition of putting some milk in her stomach instead of only in her intestines. Hopefully things are healed from her acid reflux and hopefully she doesn't breathe any into her lungs. They are monitoring her closely as they slowly transition. Overall, she's such a sweet girl. Yesterday afternoon as I was holding her, she was smiling most of the time. Of course she was sleeping, but it was so sweet to see her happy. She's been through a lot for such a small baby.

Knock on Wood

Do I dare say it? Curly Q is actually making progress. It's slow. Still many steps to take before she can actually come home. BUT we actually have progress!! Curly Q is finishing up her round of antibiotics, but she acts a lot healthier. Her oxygen pressure is down to 3 liters. Her CPAP (elephant nose mask) was stuck around 7 for a long time. She seems to be doing well on 3. She's made it to 3 in the past, but never longer than 2 days. She's been on it for almost a week now! Progress! She needs to get down to at least 1.5 liters before they will let her start doing oral feedings.

Curly Q still has the special feeding tube that empties into her intestines. They have her on continuous feedings, so milk slowly drips 24 hours a day. Docs still want to leave it for 'awhile', and they haven't started talking about removing it. She's eating about 12 ounces a day. She's growing beautifully. All the nurses and doctors comment about how big she is getting. She's just shy of 7 pounds. In the NICU, that's huge!

So... let's hope and pray and cross our fingers that the progress will continue. Still no end in sight, but if everything goes well and the progress continues quickly, I think the earliest we can bring Curly Q home is still another 2 weeks away.

Two Months Old

Happy two months to our Curly Q. Part of me can't believe it has already been two months, the other part of me feels like she's been in the NICU forever. She is doing really well, so much better than before. She's recovering from her staph infection. She'll still be on IV antibiotics for another week or so. She's acting more like herself, so she must be feeling better. She was able to come off the ventilator on Thursday. She is on a high flow nasal cannula to help her with some oxygen. The Docs are slowly weaning her from oxygen, let's cross our fingers that she can do it successfully! She is still receiving her feedings from a special feeding tube that empties into her intestines instead of her stomach. This allows her to heal from some of the damage done from her acid reflux. The Docs want to keep her on this tube for another week. She's growing like a weed. She now weighs 6 lbs 13 oz. It's amazing how big 6 pounds looks when she started out only 3 pounds.

Curly Q loves her pacifier. You can see in the picture that she is even holding her pacifier in all by herself. Hopefully all the practice she gets from sucking on her pacifier will make her a champion eater when the time comes! Also, this adorable outfit that she is wearing is a Newborn size. It fits, but it's a little big.

Day 55

Well Curly Q was doing a lot better. She didn't have any signs of infection and they stopped her antibiotics. Her oxygen needs were going down. On Friday, the Doc even mentioned to me that I should start consulting with the lactation specialists to get Curly Q started on oral feedings. I was thrilled. All of this changed Saturday morning. We got a call from the hospital telling us that they had to put Curly Q back on the ventilator. WHAT? She had several episodes of apnea (where she stops breathing). They did a chest xray and it showed that her lungs were over inflated. This indicates that she was probably experiencing Micro Aspirations (where she inhales a little bit of milk into her lungs). This can happen with babies who have acid reflux (which Curly Q does) and it can lead to infection or pneumonia. So, now started the process of testing for infection again. They took blood samples and started a blood cultures. With all of this, Curly Q's hemoglobin level had dropped and she looked pretty pale, so they also gave her a blood transfusion. They also decided to place her feeding tube deeper down. Instead of emptying into the stomach, it now empties into her intestines. This is so she won't have any more refluxing. Hopefully everything can heal, and nothing more with aspirate into her lungs.

Two nights around midnight, I got a call from the hospital. First of all, middle of the night calls from the hospital are not what I want to be receiving. The phone call woke me up, but I didn't get to the phone fast enough. I called them back and talked to the neonatologist that was taking care of Curly Q. She informed me that the blood culture came back positive for infection. They identified infection in her blood stream. They started her on a broad spectrum antibiotic in the meantime. I was sooo relieved that was all the Doc wanted. I was terrified that it was something terrible since she was calling me in the middle of the night.

This second infection is just as frustrating, but less scary. At least they know what is causing her to act this way and they have a plan to fix it. The first infection, they kept saying "We don't know". I am so grateful for medicine and doctors that keep my baby alive. With this set back, there is no way that Curly Q will be home by her due date (March 26) now. She will be on antibiotics for the next 10 days. She needs to stay on that special feeding tube (that empties into her intestines) for about 2 weeks. The frustrating part is we have no idea when she'll be coming home. It just has to be taken one day at a time, there is no way to know. And all of our sweet friends keep asking about Curly Q, and the one thing they want to know is WHEN is she coming home. We don't have any idea ... whenever she's ready.

This morning, when I went to visit her, the Doc told me that they identified the infection as a staph infection. They are not exactly sure how she got it, but they will continue to monitor her and give her antibiotics. Now we just wait for her to feel better and hopefully make some more progress.

Day 50

Thank you for all your prayers and thoughts and words of encouragement. Curly Q is doing much, much better. More tests revealed that she did, in fact, have an infection. They just weren't sure where the infection was. It wasn't a urinary tract infection. It wasn't an ear infection. They even did a lumbar puncture to make sure it wasn't a spine infection. The Docs said that they often don't find what type of infection the babies have, they just know that the antibiotics work. I think this was the case with Curly Q, the course of antibiotics seem to make her feel much better. What a relief. I don't think I've ever been so grateful for an infection. It is so much better than the unknown. And they know how to fix infections.

Curly Q's recovery is going slowly. Today they were finally able to take her off the ventilator. Hooray! They moved her right to a high flow nasal cannula. They are trying to skip her CPAP (elephant nose mask). Hopefully, she'll be able to stay off of it. Today they were able to restart feedings, just a teaspoon at each feeding. Hopefully her tummy will be able to handle it. Last night, she weighed 6 lb 3 oz. This about where she was a week ago when she got sick.

During all of this, the Docs started talking to us about a real possibility that Curly Q might need a blood transfusion. Now, this sounds super scary, but according to the Docs, its a very common thing in the NICU. Curly Q's hemoglobin (red blood cell) count was low. It's been progressively getting lower and lower over the last several weeks. They put her on an iron supplement with her vitamins to try and help. When she got sick, her body was slower to reproduce those red blood cells than normal. Plus, they kept taking blood samples to test what was wrong, which made it hard for her body to catch up. Those red blood cells help oxygen travel in the body, so this would potentially help with her respiratory problems. The last several days, her hemoglobin levels have hovered right on the boarder of needing a transfusion. Right now, the Docs are waiting to see if her body can raise the levels on her own.

This last week has been a crazy one. Intubation. Anderson Tube. PICC line. Lumbar Puncture. Blood Transfusion. Lots of scary terminology, but I am so grateful that she is being taken care of in the hospital. And she is doing better!

Day 46

Once again, it has been a while since I've updated. I appreciate every one asking how our little Curly Q is doing. This time while she's in the NICU has been quite a roller coaster. About a week and a half ago, they were able to wean Curly Q's oxygen level low enough for her to come off her CPAP (elephant nose). She did great for a day, then the next day she needed to go back onto it. The CPAP provides a level of pressure to allow her lungs to be fully inflated. Without the pressure, her lungs slowly started to collapse and she started to breathe a lot more rapidly. So, after the little bit of progress, we were right back where we started. I've been pretty frustrated with it all, wondering why she hasn't been able to get rid of the mask. Finally, her doctors were starting to say the same thing. This last week, she is 36 weeks gestational, and she should be breathing better than she is. So, they set up more tests to find reasons for why. On Tuesday, they had a cardiologist look at her heart again. This is the third time. The results came back normal all 3 times. On Thursday, they scheduled a scope exam with the ENT (ear, nose, throat) specialists. She had this done a couple weeks ago, and it came back normal. This exam was a deeper one. They took her to an operating room and sedated her, so the scope could go further down. They wanted to make sure her airway looked clear. It looked normal.

A few hours after this ENT scope thing, is when everything changed. I called Curly Q's nurse to see how she was doing and her nurse informed me that Curly Q's temperature was lower than normal. They were just trying to raise her core body temperature. They put warm packs and blankets around her. They even put her under a warmer. The nurse said she was still really sleepy and not really being awake and responsive. Strange. A couple hours later, the hospital called and informed us that Curly Q had stopped breathing several times and she needed to be put on a ventilator. WHAT? This doesn't sound good. WHY? What's going on? No one seemed to know. It seemed like she was having a reaction to the sedation from the scope thing. But the nurses kept saying that the sedation shouldn't be causing this. They really had no idea why she was reacting this way. They did several tests and everything came back normal. No sign of infections. Her lungs were nicely inflated, but hazy. No explanations. She still was really sleepy and barely moving. All night Thursday and all day Friday, she continued to 'Ride the Vent', where she has moments that she stops breathing and allows the vent to breathe for her. Friday night, I went to visit her, she was just laying there, almost lifeless. It was a pretty scary thing. I changed her diaper and she didn't even arouse. She laid completely still, just sleeping. She usually squirms quite a bit, but not last night. She eventually opened her eyes, but still laid there. She was not her normal self and it was scary to see her this way. Normally she's a spunky girl who squirms every time her diaper is changed and her hands are constantly trying to pull out her feeding tube!

Again and again the doctors and nurses had NO explanation as to why she was acting this way. They tested her blood. They tested her urine. Every level of every test came back normal. It's a little unsettling when the doctors and nurses are scratching their heads, not sure what to do. This morning when I called to see how Curly Q was doing, they had more unsettling news. She had stopped tolerating her feedings. She had spit up quite a bit and her stomach measured quite large like she was bloated. So, they've hooked her up to IV fluids and stopped her feedings. They put a tube down her throat to help relieve some of the pockets of air. So, now she's not breathing on her own. She's not responsive and super sleepy. And NOW she's not eating (or being fed). And still no explanations as to why this is happening.

Today, when I went to visit her, she seemed more responsive. She was still sleeping, but she seemed more wiggly, which I was relieved to see. She would stretch her arms and legs out. She seemed like she had a little more life in her, even though she was still sleeping. They had her undressed and uncovered to try and cool her temperature down, because she was a little feverish. I talked with the Nurse Practitioner today and she finally had some news. One of her tests came back indicating that she had an infection. They had already started her on doses of antibiotics. They weren't sure what type of infection or where the infection is though. Hopefully the antibiotics kick in and she can get back to normal soon. They still are doing some tests and monitoring her closely.

We've had a wave of a million emotions. Confusion. Frustration. Anger. Scared. Worried. Helpless. I'm just grateful for the medical technology to take care of her. I'm also grateful for feelings reassurance and comfort that comes from prayer in times of uncertainty.